literature review on primary healthcare

Login | Register

  • Current Issues
  • Previous Issues
  • Editorial Team
  • Managerial Board
  • Become a Reviewer
  • Submission Guidelines
  • Harvard Citation Style
  • Vancouver Citation Style
  • APA Citation Style
  • Download RIS
  • Download BibTeX

A Comparative Literature Review of Integrated Approach in Health Care in High and Low- Middle-Income Countries

  • Vikash Kumar (Northern Michigan University)
  • Suk Yin Caroline Cheng (Northern Michigan University)

This literature review explores the definitions, models, and outcomes of an integrated approach to delivering health services. The concept of integrated healthcare emerged in the 1970s and was influenced by the primary healthcare model proposed by the World Health Organization in the Alma-Ata Declaration on Primary Health Care in 1978. This literature review aims to examine how integration is understood and implemented in high-income and low-middle-income countries. A systematic search of major electronic databases, such as PubMed, ScienceDirect, SCOPUS, and Medline, was conducted to identify relevant peer-reviewed journal articles. The search used specific word categories related to the study, such as health system integration, health system, program, outcome/output, and perception. The findings of the study indicate that previous studies focused on policies on health system integration, generated evidence, and refined theories related to integrated care, including person-centered approaches, care coordination, and continuum of care. However, these studies mainly concentrated on desired outcomes and the effectiveness of the integrated approach, often overlooking the experiences of health workers who play a vital role within the health system. As a result, the importance of their experiences, opinions, and contributions to the success of integrated care has not been sufficiently incorporated into existing research. The study concludes that health workers’ experiences and perspectives need to be considered when examining the integrated approach in the development of social and health studies.

Keywords: integration, health services, health workers, integrated care, outcomes, models

Kumar, V. & Cheng, S. C., (2023) “A Comparative Literature Review of Integrated Approach in Health Care in High and Low- Middle-Income Countries”, Social Development Issues 46(1): 4. doi: https://doi.org/10.3998/sdi.5294

Downloads: Download XML Download PDF

62 Downloads

Published on 07 dec 2023, peer reviewed, creative commons attribution 4.0, introduction.

Integration in healthcare is a widely accepted concept across various health settings. The idea of integrated healthcare gained prominence in the 1970s, focusing on improving the health of children, adolescents, and the elderly population. This led to a strong movement towards more integrated and coordinated care, which was shaped by the primary healthcare movement following the World Health Organization’s (WHO) Alma-Ata Declaration on Primary Health Care in 1978 ( WHO, 1978 ). The primary care model aimed to provide integrated care within local communities.

Simultaneously, concerns arose regarding healthcare provision for the elderly due to age-related issues. This prompted professional to call for the development of Chronic Care Models ( Wagner et al., 2001 ). Many countries eventually adopted these models to organize healthcare and delivery services, thereby improving health outcomes for patients. The Chronic Care Model comprises six key components: self-management support for patients, decision-making support for professionals, care coordination and case management, clinical information systems, community resources for promoting healthy lifestyles, and health system leadership ( Wagner et al., 2001 ).

With the increasing healthcare needs and greater support for elderly patients, the Chronic Care Model has expanded to include determinants of health and various interventions that span primary, secondary, and tertiary levels. These interventions encompass public health issues such as health promotion, prevention, screening, early detection, rehabilitation, and palliative care ( Barr et al., 2003 ). The adoption of an integrated care approach has been driven by primary healthcare and the chronic care model. The literature review examined the conceptualization, models, and outcome of an integrated approach to delivering health services. This review examines the conceptualization of integration and explores its implementation in high-income and low-middle-income countries.

Literature Search Strategy and Method

A comprehensive literature search was conducted using electronic databases, including PubMed, ScienceDirect, SCOPUS, and Medline, to identify relevant peer-reviewed journal articles. The search was based on specific word categories related to the study, including health system integration, health system, program, outcome/output, and perception. Table 1 presents the keywords used in the literature search.

Keyword usage in literature search

NCD: non-communicable diseases.

The titles and abstracts of the identified articles were downloaded into an Excel file. Initially, a review of the titles and abstracts was conducted to assess the relevance of each study. Articles focusing on conceptualizing integration, models, effectiveness, outcomes, barriers, and facilitators were selected for the review, while clinical articles were excluded. The majority of the selected articles revolved around integrated care, service integration for elderly and chronically ill patients, and the integration of targeted health interventions (e.g., TB, HIV, malaria, tuberculosis). Most of these articles were authored by individuals from the United Kingdom, United States, and Canada.

In addition to the database search, cross-referencing was performed to identify additional relevant articles and research papers. Some articles about integration in the Indian context were retrieved from health and social science journals in India. Gray literature, including policy documents, program implementation guidelines, and operation guidelines, were also identified and retrieved from government websites, professional councils, and associations to gain insights into India’s policy and program context of non-communicable diseases (NCDs). The following sections provide a concise summary of the concept of health system integration, drawing upon literature from high-income and low-middle-income countries while highlighting issues related to implementing integrated health programs.

Health System Integration: Conceptualization, Models, and Expected Outcomes

Integration: conceptualization.

Integration in healthcare is widely recognized as a means to enhance quality, efficiency, and patient satisfaction ( Armitage, Suter, Oelke, & Adair, 2009 ; Atun, De Jongh, Secci, Ohiri, & Adeyi, 2010a ; Suter, Oelke, Adair, & Armitage, 2009 ). Researchers and policymakers argue that aligning and synergizing healthcare services through integration can yield positive results for patients and organizations. However, there is a lack of consensus among researchers regarding the concept of integration and how it can be achieved. In their literature review, Armitage et al. (2009) identified 70 phrases and 175 definitions associated with integration, used interchangeably to refer to integrated health services, integrated delivery networks, integrated healthcare delivery, organized delivery systems, integrated health organizations, clinically integrated systems, organized systems of care, accountable care systems, and other similar terms. Other scholars and organizations have also reported different definitions, conceptualizations, and applications of integration within healthcare ( Armitage et al., 2009 ; Kodner & Spreeuwenberg, 2002 ; Strandberg-Larsen & Krasnik, 2009 ; Suter et al., 2009 ).

The WHO adopts a health system perspective to define integration in healthcare. Integrated health services delivery, as per WHO, is “an approach to strengthen people-centered health systems through the comprehensive delivery of quality services across the life course. It is designed based on the multidimensional needs of the population and the individual, delivered by a coordinated multidisciplinary team of providers working across different settings and levels of care. Effective management ensures optimal outcomes and appropriate resource utilization based on the best evidence. Feedback loops are implemented to continuously improve performance, address upstream causes of ill health, and promote well-being through inter-sectoral and multisectoral actions” ( WHO, 2016 , p. 10). This definition adopts a health system viewpoint and acknowledges that integrated care can be achieved by aligning various functions of health systems.

Kodner and Spreeuwenberg (2002) define integration from a process perspective. They describe it as “a coherent set of methods and models on the funding, administrative, organizational, service delivery, and clinical levels designed to create connectivity, alignment, and collaboration within and between the cure and care sectors. The goal is to enhance the quality of care and quality of life, consumer satisfaction, and system efficiency by bridging multiple services, providers, and settings. When these efforts benefit people, the outcome can be called integrated care.” This definition emphasizes the coordination of care and interconnectedness to provide quality care to patients.

From an organizational network perspective, integration is defined by scholars such as Enthoven (2009 , p. 284) as “an organized, coordinated, and collaborative network that (1) links various healthcare providers, either through common ownership or contract, across three domains of integration – economic, non-economic, and clinical – to provide a coordinated, vertical continuum of services to a specific patient population or community, and (2) are accountable both clinically and fiscally for the clinical outcomes and health status of the population or community served, with systems in place to manage and improve them ( Enthoven, 2009 ).” Most definitions explain integration as integrating inputs, delivery, management, and organization of services to enhance access, quality, user satisfaction, and efficiency ( Armitage et al., 2009 ; Kodner & Spreeuwenberg, 2002 ).

The lack of clarity and consistency surrounding integration strategies creates confusion and poses challenges when selecting appropriate approaches. Additionally, the varying interpretations of integration make it difficult to measure the desired outcomes of integration efforts. Scholars have emphasized the need to establish a common language and framework for integration in future research and practice ( Armitage et al., 2009 ; Kodner & Spreeuwenberg, 2002 ). The understanding of integration differs across disciplines and professional viewpoints ( Contandriopoulos, Denis, Touati, & Rodriguez, 2003 ). Shaw, Rosen, and Rumbold (2011) present a visual representation, shown in Figure 1 , illustrating the diverse perspectives that shape the delivery of integrated care. These perspectives include clinical vs. managerial and professional vs. patient viewpoints. For instance, managers may perceive integration as a means to merge two systems for cost efficiency, while doctors might view integration as a way to enhance care and service delivery to improve patients’ health. Figure 1 outlines several contributing perspectives on integration.

Figure 1

Different perspectives on integrated care.

Source : Shaw et al. (2011) .

The variations in conceptualizations, viewpoints, and models used to describe integration have prompted this inquiry. It has become evident that there is a growing belief that integration can yield positive outcomes for both patients and organizations, encompassing financial and non-financial benefits. These perspectives and interests are typically presented by managers, researchers, policymakers, or executives focused on the expected integration outcomes. In healthcare, integration has created a scenario where healthcare workers and professionals collaborate to provide services to achieve the desired integration results. However, it is important to note that these perspectives do not necessarily reflect the viewpoints and experiences of healthcare workers or managers directly involved in delivering or overseeing healthcare services. Previous studies have often overlooked the descriptions of the work carried out by healthcare workers in models explaining how integrated programs can attain the expected outcomes.

Models of integration

Within healthcare delivery systems, there are various models of integration. Coxon (2005) identifies two models of integration. The first model involves standalone organizations integrating health and social care alongside their mainstream services. The second model is the cross-agency model, which brings together different disciplines and professionals to collaborate at the service user level ( Coxon, 2005 ). Strandberg-Larsen et al. (2009) identify two distinct conceptual categories of health system integration within the literature: (1) integration related to organizational structure, primarily focusing on financial performance, and (2) integration related to the organization of care, aiming to coordinate different activities to ensure harmonious functioning for the benefit of the patient ( Coddington, Ackerman, & Moore, 2001 ; Gröne, Garcia-Barbero, & WHO European Office for Integrated Health Care Services, 2001 ).

Armitage et al. (2009) , in their systematic review of health system integration, found various models of integration. They categorized these models into three main groups: system-level, program/service-level, and progressive or sequential models. System-level models often focus on organizational changes, including performance, leadership style, structure, and processes ( Miller, 2000 ). Program or service-level integration models concentrate on case management to improve patient outcomes through better coordination of services ( King & Meyer, 2006 ; O’Connell, Kristjanson, & Orb, 2000 ; Weiss, 1998 ), co-location of services and information ( Chuah et al., 2017 ; Haldane et al., 2017 ; O’Connell et al., 2000 ; Sigfrid et al., 2017 ; Wulsin, Söllner, & Pincus, 2006 ), implementation of teams ( O’Connell et al., 2000 ), and the use of a population health approach ( Byrnes, 1998 ). This approach is observed in low and middle-income countries, where targeted and vertical programs are integrated with the general hospital system, such as integrating TB and HIV programs in those settings ( Howard & El-Sadr, 2010 ; Legido-Quigley et al., 2013 ).

Progressive or sequential models of integration emphasize integration “as a means to achieve improved healthcare performance, not the final destination” ( Gillies, Shortell, Anderson, Mitchell, & Morgan, 1993 ). The premise of this approach is based on theories that support improving healthcare performance while adding value to the system, program, community, patients, and providers ( Gillies et al., 1993 ). Each sequential model proposes several stages to fully integrate care ( Boon, Verhoef, O’Hara, & Findlay, 2004 ).

The desired outcome of integration

Evans, Baker, Berta, and Barnsley (2013) , in their literature review, identified four desired outcomes of integrated healthcare strategies: economic benefits, value with improved quality, organizational performance, and patient-level outcomes. Initially, economic benefits were the primary drivers for horizontal and vertical integration strategies. Integration was framed in terms of efficiency, with potential secondary benefits of improved quality and economies of scale. However, successfully integrating staff, policies, funding, and clinical processes requires investments and might improve the quality of care but not necessarily lead to immediate economic benefits ( Burns, Gimm, & Nicholson, 2005 ). Over time, there was a shift towards focusing on the quality-related outcomes of integration, driven by the demand for greater patient and provider protection.

However, the outcomes of integrated healthcare strategies have been inconsistent. Wan et al. (2002) reported financial challenges resulting from integration ( Wan & Wang, 2003 ), while other scholars found negative, mixed, or inconclusive impacts ( Bazzoli, Chan, Shortell, & D’Aunno, 2000 ; Burns et al., 2005 ). These inconsistencies may be attributed to implementation difficulties, methodological challenges, conceptual ambiguity, contextual differences, or a lack of long-term studies ( Stein & Rieder, 2009 ). The lack of consensus among managers, policymakers, clinicians, and patients regarding the purpose of health system integration can hinder efforts to secure cooperation at all levels ( Friedman & Goes, 2001 ; Stein & Rieder, 2009 ). It has been observed and recognized that the quality of care may be at risk, leading to a demand for greater patient protection and public accountability ( Evans et al., 2013 ). Additionally, growing evidence suggests that successful integration of policies, staff, funding, and clinical processes requires significant investment, which may result in improved quality of care but not necessarily immediate efficiencies, particularly in the short term ( Burns et al., 2005 ; Leutz, 1999 ).

Integrated Health Care

As discussed in the previous section, integration has been conceptualized in various ways, and its meaning varies depending on the context. The purpose of this section is to present and discuss the different understandings of integration in high-income and low-middle-income countries.

Integration literature from high-income countries

In high-income countries, integrated delivery systems emerged in the late 1980s due to the rapidly changing reimbursement system and healthcare financing environment ( Spitzer, 2001 ). Initially, the conceptualization of integration was rooted in a mechanistic view of care delivery and system change ( Ackerman, 1992 ; Charns, 1997 ; Fox, 1989 ). Scholars argued that integrated health systems could be designed from the top down by taking a series of steps, which involved bringing various elements of healthcare delivery together under large and centralized structures. However, many of these interventions and integration designs failed, leading to discussions about recognizing the complexity and dynamics of the integration process ( Baskin, Goldstein, & Lindberg, 2000 ; Begun, Zimmerman, & Dooley, 2003 ).

Many scholars argued that healthcare organizations should be theorized as Complex-Adaptive Systems (CAS), capable of self-organization without external control and functioning based on relationships and collaborations among different agents ( McDaniel & Driebe, 2001 ; Plsek & Greenhalgh, 2001 ). It was proposed that control and decision-making capacity, which determined the overall behavior of the organization, could be dispersed and decentralized. These ideas and the theoretical framework surrounding CAS allowed scholars to understand the challenges and opportunities for managing new or existing integration efforts in healthcare organizations ( Dattée & Barlow, 2010 ; Edgren & Barnard, 2012 ; Tsasis, Evans, & Owen, 2012 ).

Integration strategies, including horizontal and vertical integration, aimed at achieving better economic outcomes, such as potential economies of scale, market domination, increased profits, and, ultimately, better prospects for survival ( Thaldorf & Liberman, 2007 ). Initial efficiencies and improvements in the quality of care were assumed to be advantages of integration and a means of achieving economies of scale as a secondary potential benefit ( Ackerman, 1992 ; Conrad & Shortell, 1996 ; Walston, Kimberly, & Burns, 1996 ). The growing demand for healthcare services, driven by demographic and epidemiological transitions, rising expectations of the population, and recognition of patients’ rights, intensified the need for healthcare reform ( Gröne et al., 2001 ). This demand, coupled with the availability of new medical technologies and information systems, facilitated the adoption of “integration” strategies in healthcare reforms, specifically the integration of services, to meet health needs ( Gröne & Garcia-Barbero, 2001 ).

Many healthcare organizations in the UK and Canada have adopted integration strategies to minimize and control the cost of care ( Jiwani & Fleury, 2011 ; Shortell, Gillies, & Anderson, 1994 ). However, the focus on the economic benefits of integration has expanded to include a focus on efficiency and quality of care ( Evans et al., 2013 ). This shift is driven by a greater demand for patient safety and accountability from healthcare organizations ( Grol, Bosch, Hulscher, Eccles, & Wensing, 2007 ; Gröne & Garcia-Barbero, 2001 ). Furthermore, there is growing evidence to support the integration of staff, policies, funding, and clinical processes through new interventions that can improve the quality of care but may not necessarily yield economic benefits, especially in the short term ( Burns et al., 2005 ).

Integrated healthcare strategies in high-income countries aim to provide clinical services to individual patients for better health outcomes. Many integrated care models have been implemented for elderly patients or those with long-term chronic health conditions or complex needs. From a clinical perspective, the integrated care model tends to improve health outcomes, patients’ experiences, and the quality of care. However, these models also serve the organizational goal of reducing the cost of care by minimizing residential care and short hospital stays ( Curry & Ham, 2010 ; Erens et al., 2016 ).

Integration literature from low-income countries

Over the past several decades, policymakers worldwide have recognized the need for an integrated approach to address the emerging healthcare needs of the population. The focus of health service delivery has shifted from the hospital to the population setting, emphasizing patient engagement at the frontline. Previous studies have highlighted the gap between the increasing burden of chronic diseases and the availability of services through the local health system, which is largely based on hospital-based treatment ( Atun et al., 2013 ; Gröne & Garcia-Barbero, 2001 ; Shigayeva, Atun, McKee, & Coker, 2010 ; Swanson et al., 2015 ). The development of medical technology, such as vaccines, new drugs, and medical procedures, has shaped the landscape of the health system. Over many decades, these technologies have addressed health problems in resource-constrained settings and have influenced and offered new alternatives for service integration.

Authors have argued that donor-driven vertical disease-specific programs in lowand middle-income countries have fragmented the healthcare system ( Ooms, Van Damme, Baker, Zeitz, & Schrecker, 2008 ; Patel et al., 2015 ; Swanson et al., 2015 ) and hindered the integration process. The available empirical evidence on the integration of health services conceptualizes integration as a technical and mechanistic process for delivering healthcare ( Armitage et al., 2009 ; Evans et al., 2013 ; Partapuri, Steinglass, & Sequeira, 2012 ). In low-middle-income countries, integration is seen as combining services for multiple interrelated diseases to increase the overall efficiency of the health system and improve patient convenience ( Lenka & Bitra, 2013 ). For example, integration may involve combining diabetes or HIV screening with TB screening services at a health facility to provide comprehensive care for patients with both HIV and TB. Another example could be delivering family planning messages during routine immunization sessions ( Cooper et al., 2015 ).

Despite the growing interest in integrating health services, there is limited empirical evidence on how integration should be implemented ( Armitage et al., 2009 ; Atun et al., 2010a ; Wallace, Dietz, & Cairns, 2009 ). Amo-Adjei et al. (2014) , in their study on TB-HIV integration, reported that integrating HIV and TB programs improved clinical synergy and reduced duplication of services in service delivery. However, the integration effort also increased workloads for frontline workers and reduced access to some services due to stigma. Studies on the integration of the leprosy program in India reported an increase in new case detection but a decrease in follow-ups, treatment monitoring, and adherence to the treatment protocol ( Parkash & Rao, 2003 ; Rao, Bhuskade, Raju, Rao, & Desikan, 2002 ). Even with strong institutional support, integrating health services may not necessarily result in improved quality and increased access to healthcare. Factors such as management priorities, organizational culture, institutional policy, and systems can affect the implementation of integrated health programs ( Watt et al., 2017 ).

Previous studies on integration have mainly focused on programmatic factors related to the availability of health workers, medicines, and knowledge while paying less attention to factors related to the broader health system ( Chuah et al., 2017 ; Haldane et al., 2018 ; Watt et al., 2017 ). The WHO framework of health system “building blocks” provides insight into designing and delivering health services by understanding the interdependent nature of the six health system blocks ( Figure 2 ). An intervention in one block may have intended and unintended consequences on other blocks ( Atun et al., 2010a ). For example, integrating ANC services with primary care requires trained health workers, necessitating appropriate interventions in the health workforce block and clear guidelines.

Figure 2

Health systems “building block” framework.

Source : WHO (2007) .

Drawing on empirical evidence and theory, Atun et al. (2010b) proposed a conceptual framework and analytical approach for analyzing the integration of health interventions into the health system. This analytical approach focuses on elements of health interventions that influence their adoption, diffusion, and assimilation within the health system. By employing this approach, it becomes possible to compare and contrast efforts to integrate health interventions in different health settings and provide explanations for variations. Table 2 illustrates the elements of integration and critical functions within the health system, enabling an analysis of the degree of integration of health interventions into the general health system.

Critical health system’s functions and elements of integration

Source : Atun et al. (2010a) .

Atun et al. (2010a) , in their review of the integration of targeted health interventions, demonstrate that various elements of health interventions have been integrated into one or more critical functions of health systems. However, the extent and nature of integration vary significantly due to factors such as socio-economic development, government commitment, and the inclination of health workers towards specific designs ( Atun et al., 2010a ).

Over the past two decades, numerous large global health initiatives (GHIs) and donor-driven targeted health programs have emerged, focusing on reducing disease burden and strengthening health systems in low and middle-income countries. These targeted health interventions primarily involve research or the implementation of new interventions, such as technology, vaccines, drugs, and market-oriented solutions through public-private partnerships. However, these GHIs have led to fragmentation in service delivery, with unintended consequences for health systems ( Atun et al., 2010a ; Enthoven, 2009 ; Frasca, Fauré, & Atlani-Duault, 2018 ; Ooms et al., 2008 ; Patel et al., 2015 ). Studies have shown that program integration often diverts attention and influences resource allocation, drawing resources away from pressing health priorities like tuberculosis, malaria, diarrheal diseases, acute respiratory illnesses, and immunization ( England, 2007 ; Yu et al., 2008 ).

There has been a growing demand to integrate targeted health interventions, such as tuberculosis, leprosy, malaria, HIV/AIDS, immunization, and others, with general health systems at the point of care ( Atun et al., 2010a ; Dudley & Garner, 2011 ; Legido-Quigley et al., 2013 ; Marais et al., 2013 ). These health interventions primarily focus on specific diseases and aim to reduce service duplication, increase the utilization of existing resources, and provide access to essential treatment for targeted population groups ( Watt et al., 2017 ). Integration is also sought to align targeted interventions with general health systems for long-term sustainability.

The outcome of integration is typically measured by data on the uptake of health services, such as increased contraceptive use, immunization coverage, and the number of patients receiving medical treatment ( Partapuri et al., 2012 ). However, the likelihood of successful implementation of integrated health programs depends on factors such as the availability of human resources, compatibility of services or supply chain management, and infrastructure ( Lenka & Bitra, 2013 ).

Discussion and Conclusion

An integrated approach has been implemented globally to improve patients’ health outcomes and organizational performance and reduce the cost of care ( Armitage et al., 2009 ; Atun et al., 2010a , 2013 ; De Jongh, Gurol-Urganci, Allen, Jiayue Zhu, & Atun, 2016 ; Legido-Quigley et al., 2013 ; Suter et al., 2009 ; Swanson et al., 2015 ; Tudor Car et al., 2011 ; World Health Organization Maximizing Positive Synergies Collaborative Group et al., 2009 ). Policymakers recognize the effectiveness of the integrated approach in delivering health services related to maternal and child health, NCDs, family planning, mental health, HIV, TB, and malaria. This is typically achieved through implementing health programs at primary, secondary, and tertiary care levels ( Armitage et al., 2009 ). However, previous studies have primarily focused on policy perspectives, aiming to formulate policies on health system integration or refine theories related to integrated care, such as person-centered approaches, care coordination, and continuum of care ( Ackerman, 1992 ; Ahgren & Axelsson, 2005 ; Burns & Pauly, 2002 ; Gröne et al., 2001 ; King & Meyer, 2006 ; Suter et al., 2009 ). These studies have also focused on desired outcomes and the effectiveness of the integrated approach while largely ignoring the experiences of health workers, who are integral to the health system. The significance of their experiences, viewpoints, and contributions to the success of integrated care have not been adequately incorporated into these studies.

Health systems in low- and middle-income countries face challenges such as shortages of health workers, infrastructure, drugs, and essential supplies ( Acharya et al., 2017 ; Legido-Quigley et al., 2013 ; Saraceno et al., 2007 ; Semrau et al., 2015 ; Swanson et al., 2015 ; WHO, 2010 ). These issues significantly influence the implementation of integrated health services. In this context, future research must focus on understanding how health workers deliver integrated healthcare to achieve the desired outcomes. Conducting a study that explores the organization of integrated health programs from the perspectives of health workers while delivering integrated health services can help identify issues that could be addressed through corrective measures at the policy level.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and publication of this article.

The author(s) received no financial support for this article’s research, authorship, and publication.

Acharya, B., Maru, D., Schwarz, R., Citrin, D., Tenpa, J., Hirachan, S., … Ekstrand, M. (2017). Partnerships in mental healthcare service delivery in low-resource settings: Developing an innovative network in rural Nepal. Globalization and Health , 13(1), 2. https://doi.org/10.1186/s12992-016-0226-0 https://doi.org/10.1186/s12992-016-0226-0

Ackerman, F. K. (1992). The movement toward vertically integrated, regional health systems. Health Care Management Review , 17(3), 81–88. https://doi.org/10.1097/00004010-199222000-00010 https://doi.org/10.1097/00004010-199222000-00010

Ahgren, B., & Axelsson, R. (2005). Evaluating integrated health care: A model for measurement. International Journal of Integrated Care , 5(3), e01. https://doi.org/10.5334/ijic.134 https://doi.org/10.5334/ijic.134

Amo-Adjei, J., Kumi-Kyereme, A., Amo, H. F., & Awusabo-Asare, K. (2014). The politics of tuberculosis and HIV service integration in Ghana. Social science & medicine , 117, 42–49. https://doi.org/10.1016/j.socscimed.2014.07.008 https://doi.org/10.1016/j.socscimed.2014.07.008

Armitage, G. D., Suter, E., Oelke, N. D., & Adair, C. E. (2009). Health systems integration: State of the evidence. International Journal of Integrated Care , 9, e82. https://doi.org/10.5334/ijic.316 https://doi.org/10.5334/ijic.316

Atun, R., De Jongh, T., Secci, F., Ohiri, K., & Adeyi, O. (2010a). A systematic review of the evidence on integration of targeted health interventions into health systems. Health Policy and Planning , 25(1), 1–14. https://doi.org/10.1093/heapol/czp053 https://doi.org/10.1093/heapol/czp053

Atun, R., De Jongh, T., Secci, F., Ohiri, K., & Adeyi, O. (2010b). Integration of targeted health interventions into health systems: A conceptual framework for analysis. Health Policy and Planning , 25(2), 104–111. https://doi.org/10.1093/heapol/czp055 https://doi.org/10.1093/heapol/czp055

Atun, R., Jaffar, S., Nishtar, S., Knaul, F. M., Barreto, M. L., Nyirenda, M., … Piot, P. (2013). Improving responsiveness of health systems to non-communicable diseases. Lancet , 381(9867), 690–697. https://doi.org/10.1016/S0140-6736(13)60063-X https://doi.org/10.1016/S0140-6736(13)60063-X

Barr, V. J., Robinson, S., Marin-Link, B., Underhill, L., Dotts, A., Ravensdale, D., & Salivaras, S. (2003). The expanded Chronic Care Model: An integration of concepts and strategies from population health promotion and the Chronic Care Model. Hospital Quarterly , 7(1), 73–82. https://doi.org/10.12927/hcq.2003.16763 https://doi.org/10.12927/hcq.2003.16763

Baskin, K., Goldstein, J., & Lindberg, C. (2000). Merging, de-merging, and emerging at Deaconess Billings Clinic. Physician Executive , 26(3), 20–25. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/10947459 http://www.ncbi.nlm.nih.gov/pubmed/10947459

Bazzoli, G. J., Chan, B., Shortell, S. M., & D’Aunno, T. (2000). The financial performance of hospitals belonging to health networks and systems. Inquiry: A Journal of Medical Care Organization, Provision and Financing , 37(3), 234–252. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11111282 http://www.ncbi.nlm.nih.gov/pubmed/11111282

Begun, J. W., Zimmerman, B., & Dooley, K. (2003). Health care organizations as complex adaptive systems. In S. M. Mick & M. Wyttenbach (Eds.), Advances in health care organization theory . Jossey-Boss: San Francisco, California, pp. 253–288. https://doi.org/10.1177/009430610403300325 https://doi.org/10.1177/009430610403300325

Boon, H., Verhoef, M., O’Hara, D., & Findlay, B. (2004). From parallel practice to integrative health care: A conceptual framework. BMC Health Services Research , 4(1), 15. https://doi.org/10.1186/1472-6963-4-15 https://doi.org/10.1186/1472-6963-4-15

Burns, L. R., Gimm, G., & Nicholson, S. (2005). The financial performance of integrated health organizations. Journal of Healthcare Management , 50(3), 191–211. https://doi.org/10.1097/00115514-200505000-00009 https://doi.org/10.1097/00115514-200505000-00009

Burns, L. R., & Pauly, M. V. (2002). Integrated delivery networks: A detour on the road to integrated health care? Health Affairs , 21(4), 128–143. https://doi.org/10.1377/hlthaff.21.4.128 https://doi.org/10.1377/hlthaff.21.4.128

Byrnes, J. J. (1998). Do integrated healthcare strategies enhance quality? Integrated Healthcare Report , 6–10. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/10182828 http://www.ncbi.nlm.nih.gov/pubmed/10182828

Charns, M. P. (1997). Organization design of integrated delivery systems. Hospital & Health Services Administration , 42(9), 411–433.

Chuah, F. L. H., Haldane, V. E., Cervero-Liceras, F., Ong, S. E., Sigfrid, L. A., Murphy, G., … Legido-Quigley, H. (2017). Interventions and approaches to integrating HIV and mental health services: A systematic review. Health Policy and Planning , 32, iv27–iv47. https://doi.org/10.1093/heapol/czw169 https://doi.org/10.1093/heapol/czw169

Coddington, D. C., Ackerman, F. K., & Moore, K. D. (2001). Integrated health care systems: Major issues and lessons learned. Healthcare Leadership & Management Report , 9(1), 1–9. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11255622 http://www.ncbi.nlm.nih.gov/pubmed/11255622

Conrad, D. A., & Shortell, S. M. (1996). Integrated health systems: Promise and performance. Frontiers of Health Services Management , 13(1), 3–40; discussion 57–58. https://doi.org/10.1097/01974520-199607000-00002 https://doi.org/10.1097/01974520-199607000-00002

Contandriopoulos, A.-P., Denis, J.-L., Touati, N., & Rodriguez, C. (2003). The integration of health care: Dimessions and implementation (No. N04–01). Retrieved from http://www.irspum.umontreal.ca/rapportpdf/n04-01.pdf http://www.irspum.umontreal.ca/rapportpdf/n04-01.pdf

Cooper, C. M., Fields, R., Mazzeo, C. I., Taylor, N., Pfitzer, A., Momolu, M., & Jabbeh-Howe, C. (2015). Successful proof of concept of family planning and immunization integration in Liberia. Global Health, Science and Practice , 3(1), 71–84. https://doi.org/10.9745/GHSP-D-14-00156 https://doi.org/10.9745/GHSP-D-14-00156

Coxon, K. (2005). Common experiences of staff working in integrated health and social care organisations: A European perspective. Journal of Integrated Care , 13(2), 13–21. https://doi.org/10.1108/14769018200500012 https://doi.org/10.1108/14769018200500012

Curry, N., & Ham, C. (2010). Clinical and service integration. The route to improve outcomes . London: The Kings Fund. Retrieved from https://www.kingsfund.org.uk/sites/default/files/Clinical-and-service-integration-Natasha-Curry-Chris-Ham-22-November-2010.pdf https://www.kingsfund.org.uk/sites/default/files/Clinical-and-service-integration-Natasha-Curry-Chris-Ham-22-November-2010.pdf

Dattée, B., & Barlow, J. (2010). Complexity and whole-system change programmes. Journal of Health Services Research and Policy , 15(Suppl. 2), 19–25. https://doi.org/10.1258/jhsrp.2009.009097 https://doi.org/10.1258/jhsrp.2009.009097

De Jongh, T. E., Gurol-Urganci, I., Allen, E., Jiayue Zhu, N., & Atun, R. (2016). Barriers and enablers to integrating maternal and child health services to antenatal care in low and middle income countries. An International Journal of Obstetrics and Gynaecology , 123(4), 549–557. https://doi.org/10.1111/1471-0528.13898 https://doi.org/10.1111/1471-0528.13898

Dudley, L., & Garner, P. (2011). Strategies for integrating primary health services in low- and middle-income countries at the point of delivery. Cochrane Database of Systematic Reviews (Online) , 7, CD003318. https://doi.org/10.1002/14651858.CD003318.pub3 https://doi.org/10.1002/14651858.CD003318.pub3

Edgren, L., & Barnard, K. (2012). Complex adaptive systems for management of integrated care. Leadership in Health Services , 25(1), 39–51. https://doi.org/10.1108/17511871211198061 https://doi.org/10.1108/17511871211198061

Enthoven, A. C. (2009). Integrated delivery systems: The cure for fragmentation. American Journal of Managed Care , 15(10), S284–S290.

England, R. (2007). The dangers of disease specific programmes for developing countries. Bmj , 335(7619), 565. Retrieved from https://www.bmj.com/content/335/7619/565.full.pdf+html https://www.bmj.com/content/335/7619/565.full.pdf+html

Erens, B., Wistow, G., Mounier-Jack, S., Douglas, N., Jones, L., Manacorda, T., & Mays, N. (2016). Early evaluation of the integrated care and support pioneers programme . Retrieved from https://piru.ac.uk/assets/files/Early_evaluation_of_IC_Pioneers_Final_Report.pdf https://piru.ac.uk/assets/files/Early_evaluation_of_IC_Pioneers_Final_Report.pdf

Evans, J. M., Baker, G. R., Berta, W., & Barnsley, J. (2013). The evolution of integrated health care strategies. Advances in Health Care Management , 15, 125–161. https://doi.org/10.1108/S1474-8231(2013)0000015011 https://doi.org/10.1108/S1474-8231(2013)0000015011

Fox, W. L. (1989). Vertical integration strategies: More promising than diversification. Health Care Management Review , 14(3), 49–56. https://doi.org/10.1097/00004010-198922000-00007 https://doi.org/10.1097/00004010-198922000-00007

Frasca, T., Fauré, Y.-A., & Atlani-Duault, L. (2018). Decentralisation of Brazil’s HIV/AIDS programme: Intended and unintended consequences. Global Public Health , 13(12), 1725–1736. https://doi.org/10.1080/17441692.2018.1455888 https://doi.org/10.1080/17441692.2018.1455888

Friedman, L., & Goes, J. (2001). Why integrated health networks have failed. Frontiers of Health Services Management , 17(4), 3–28. https://doi.org/10.1097/01974520-200104000-00002 https://doi.org/10.1097/01974520-200104000-00002

Gillies, R. R., Shortell, S. M., Anderson, D. A., Mitchell, J. B., & Morgan, K. L. (1993). Conceptualizing and measuring integration: Findings from the health systems integration study. Hospital & Health Services Administration , 38(4), 467–489. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/10130608 http://www.ncbi.nlm.nih.gov/pubmed/10130608

Grol, R., Bosch, M. C., Hulscher, M. E. J. L., Eccles, M. P., & Wensing, M. (2007). Planning and studying improvement in patient care: The use of theoretical perspectives. The Milbank Quarterly , 85(1), 93–138. https://doi.org/10.1111/j.1468-0009.2007.00478.x https://doi.org/10.1111/j.1468-0009.2007.00478.x

Gröne, O., & Garcia-Barbero, M. (2001). Integrated care. International Journal of Integrated Care , 1(2), 1–10. https://doi.org/10.5334/ijic.28 https://doi.org/10.5334/ijic.28

Gröne, O., Garcia-Barbero, M., & WHO European Office for Integrated Health Care Services. (2001). Integrated care: A position paper of the WHO European Office for Integrated Health Care Services. International Journal of Integrated Care , 1, e21. https://doi.org/10.5334/ijic.28 https://doi.org/10.5334/ijic.28

Haldane, V., Cervero-Liceras, F., Chuah, F. L., Ong, S. E., Murphy, G., Sigfrid, L., … Legido-Quigley, H. (2017). Integrating HIV and substance use services: A systematic review. Journal of the International AIDS Society , 20(1), 21585. https://doi.org/10.7448/IAS.20.1.21585 https://doi.org/10.7448/IAS.20.1.21585

Haldane, V., Legido-Quigley, H., Chuah, F. L. H., Sigfrid, L., Murphy, G., Ong, S. E., … Perel, P. (2018). Integrating cardiovascular diseases, hypertension, and diabetes with HIV services: A systematic review. AIDS Care – Psychological and Socio-Medical Aspects of AIDS/HIV , 30(1), 103–115. https://doi.org/10.1080/09540121.2017.1344350 https://doi.org/10.1080/09540121.2017.1344350

Howard, A. A., & El-Sadr, W. M. (2010). Integration of tuberculosis and HIV services in sub-Saharan Africa: Lessons learned. Clinical Infectious Diseases , 50(Suppl. 3), S238–S244. https://doi.org/10.1086/651497 https://doi.org/10.1086/651497

Jiwani, I., & Fleury, M.-J. (2011). Divergent modes of integration: The Canadian way. International Journal of Integrated Care , 11(5), e018. https://doi.org/10.5334/ijic.578 https://doi.org/10.5334/ijic.578

King, G., & Meyer, K. (2006). Service integration and co-ordination: A framework of approaches for the delivery of co-ordinated care to children with disabilities and their families. Child: Care, Health and Development , 32(4), 477–492. https://doi.org/10.1111/j.1365-2214.2006.00610.x https://doi.org/10.1111/j.1365-2214.2006.00610.x

Kodner, D. L., & Spreeuwenberg, C. (2002). Integrated care: Meaning, logic, applications, and implications – A discussion paper. International Journal of Integrated Care , 2(4), 1–6. https://doi.org/10.5334/ijic.67 https://doi.org/10.5334/ijic.67

Legido-Quigley, H., Montgomery, C. M., Khan, P., Atun, R., Fakoya, A., Getahun ,H., & Grant, A. D. (2013). Integrating tuberculosis and HIV services in low- and middle-income countries: A systematic review. Tropical Medicine & International Health , 18(2), 199–211. https://doi.org/10.1111/tmi.12029 https://doi.org/10.1111/tmi.12029

Lenka, S. R., & Bitra, G. (2013). Integrated health service delivery: Why and how? National Journal of Medical Research , 3(3), 297–299. Retrieved from http://www.scopemed.org/?mno=45267 http://www.scopemed.org/?mno=45267

Leutz, W. N. (1999). Five laws for integrating medical and social services: Lessons from the United States and the United Kingdom. The Milbank Quarterly , 77(1), 77–110. https://doi.org/10.1111/1468-0009.00125 https://doi.org/10.1111/1468-0009.00125

Marais, B. J., Lönnroth, K., Lawn, S. D., Migliori, G. B., Mwaba, P., Glaziou, P., … Zumla, A. (2013). Tuberculosis comorbidity with communicable and non-communicable diseases: Integrating health services and control efforts. The Lancet. Infectious Diseases , 13(5), 436–448. https://doi.org/10.1016/S1473-3099(13)70015-X https://doi.org/10.1016/S1473-3099(13)70015-X

McDaniel, R. R., & Driebe, D. J. (2001). Complexity science and health care management. In J. D. Blair, M. D. Fottler, & G. T. Savage (Eds.), Advances in health care management . Emerald Group Publishing Limited: Bingley, pp. 11–36. https://doi.org/10.1016/S1474-8231(01)02021-3 https://doi.org/10.1016/S1474-8231(01)02021-3

Miller, J. L. (2000). A post-mortem on healthcare integration: An organizational development approach. Healthcare Leadership & Management Report , 8(9), 5–15. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11184824 http://www.ncbi.nlm.nih.gov/pubmed/11184824

O’Connell, B., Kristjanson, L., & Orb, A. (2000). Models of integrated cancer care: A critique of the literature. Australian Health Review: A Publication of the Australian Hospital Association , 23(1), 163–178. https://doi.org/10.1071/AH000163 https://doi.org/10.1071/AH000163

Ooms, G., Van Damme, W., Baker, B. K., Zeitz, P., & Schrecker, T. (2008). The “diagonal” approach to Global Fund financing: A cure for the broader malaise of health systems? Globalization and Health , 4, 6. https://doi.org/10.1186/1744-8603-4-6 https://doi.org/10.1186/1744-8603-4-6

Parkash, I., & Rao, P. S. (2003). Study on integration of the National Leprosy Eradication Programme into primary health care services: A pilot project. Indian Journal of Leprosy , 75(1), 25–35. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15253392 http://www.ncbi.nlm.nih.gov/pubmed/15253392

Partapuri, T., Steinglass, R., & Sequeira, J. (2012). Integrated delivery of health services during outreach visits: A literature review of program experience through a routine immunization lens. The Journal of Infectious Diseases , 205(Suppl. 1), S20–S27. https://doi.org/10.1093/infdis/jir771 https://doi.org/10.1093/infdis/jir771

Patel, V., Parikh, R., Nandraj, S., Balasubramaniam, P., Narayan, K., Paul, V. K., … Reddy, K. S. (2015). Assuring health coverage for all in India. The Lancet , 386(10011), 2422–2435. https://doi.org/10.1016/S0140-6736(15)00955-1 https://doi.org/10.1016/S0140-6736(15)00955-1

Plsek, P. E., & Greenhalgh, T. (2001). The challenge of complexity in health care. British Medical Journal , 323(7313), 625–628. https://doi.org/10.1136/bmj.323.7313.625 https://doi.org/10.1136/bmj.323.7313.625

Rao, V. P., Bhuskade, R. A., Raju, M. S., Rao, P. V., & Desikan, K. V. (2002). Initial experiences of implementation of functional integration (FI) in LEPRA India projects in Orissa. Leprosy Review , 73(2), 167–176. https://doi.org/10.47276/lr.73.2.167 https://doi.org/10.47276/lr.73.2.167

Saraceno, B., van Ommeren, M., Batniji, R., Cohen, A., Gureje, O., Mahoney, J., … Underhill, C. (2007). Barriers to improvement of mental health services in low-income and middle-income countries. Lancet (London, England) , 370(9593), 1164–1174. https://doi.org/10.1016/S0140-6736(07)61263-X https://doi.org/10.1016/S0140-6736(07)61263-X

Semrau, M., Evans-Lacko, S., Alem, A., Ayuso-Mateos, J. L., Chisholm, D., Gureje, O., … Thornicroft, G. (2015). Strengthening mental health systems in low- and middle-income countries: The Emerald programme. BMC Medicine , 13(1), 79. https://doi.org/10.1186/s12916-015-0309-4 https://doi.org/10.1186/s12916-015-0309-4

Shaw, S., Rosen, R., & Rumbold, B. (2011). What is integrated care. London: Nuffield Trust , 7, 1–23. Retrieved from https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=78e6dbbea14252400eef836aef4429b42e9056dd https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=78e6dbbea14252400eef836aef4429b42e9056dd

Shigayeva, A., Atun, R., McKee, M., & Coker, R. (2010). Health systems, communicable diseases and integration. Health Policy and Planning , 25(Suppl. 1), i4– i20. https://doi.org/10.1093/heapol/czq060 https://doi.org/10.1093/heapol/czq060

Shortell, S. M., Gillies, R. R., & Anderson, D. A. (1994). The new world of managed care: Creating organized delivery systems. Health Affairs , 13(5), 46–64. https://doi.org/10.1377/hlthaff.13.5.46 https://doi.org/10.1377/hlthaff.13.5.46

Sigfrid, L., Murphy, G., Haldane, V., Chuah, F. L. H., Ong, S. E., Cervero-Liceras, F., … Legido-Quigley, H. (2017). Integrating cervical cancer with HIV healthcare services: A systematic review. PLoS One , 12(7), e0181156. https://doi.org/10.1371/journal.pone.0181156 https://doi.org/10.1371/journal.pone.0181156

Spitzer, R. (2001). A case for conceptual competency in an integrated delivery system. Nursing Administration Quarterly , 25(4), 79–82. https://doi.org/10.1097/00006216-200107000-00012 https://doi.org/10.1097/00006216-200107000-00012

Stein, K. V., & Rieder, A. (2009). Integrated care at the crossroads—Defining the way forward. International Journal of Integrated Care , 9(2), e10. https://doi.org/10.5334/ijic.315 https://doi.org/10.5334/ijic.315

Strandberg-Larsen, M., & Krasnik, A. (2009). Measurement of integrated healthcare delivery: A systematic review of methods and future research directions. International Journal of Integrated Care , 9, e01. https://doi.org/10.5334/ijic.305 https://doi.org/10.5334/ijic.305

Suter, E., Oelke, N. D., Adair, C. E., & Armitage, G. D. (2009). Ten key principles for successful health systems integration. Healthcare Quarterly (Toronto, Ont.) , 13, 16–23. https://doi.org/10.12927/hcq.2009.21092 https://doi.org/10.12927/hcq.2009.21092

Swanson, R. C., Atun, R., Best, A., Betigeri, A., de Campos, F., Chunharas, S., … Van Damme, W. (2015). Strengthening health systems in low-income countries by enhancing organizational capacities and improving institutions. Globalization and Health , 11(1), 5. https://doi.org/10.1186/s12992-015-0090-3 https://doi.org/10.1186/s12992-015-0090-3

Thaldorf, C., & Liberman, A. (2007). Integration of health care organizations: Using the power strategies of horizontal and vertical integration in public and private health systems. Health Care Manager , 26(2), 116–127. https://doi.org/10.1097/01.HCM.0000268614.41115.fc https://doi.org/10.1097/01.HCM.0000268614.41115.fc

Tsasis, P., Evans, J. M., & Owen, S. (2012). Reframing the challenges to integrated care: A complex-adaptive systems perspective. International Journal of Integrated Care , 12, e190. https://doi.org/10.5334/ijic.843 https://doi.org/10.5334/ijic.843

Tudor Car, L., Van-Velthoven, M. H., Brusamento, S., Elmoniry, H., Car, J., Majeed, A., & Atun, R. (2011). Integrating prevention of mother-to-child HIV transmission (PMTCT) programmes with other health services for preventing HIV infection and improving HIV outcomes in developing countries. Cochrane Database of Systematic Reviews (Online) , 6, CD008741. https://doi.org/10.1002/14651858.CD008741.pub2 https://doi.org/10.1002/14651858.CD008741.pub2

Wagner, E. H., Austin, B. T., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs , 20(6), 64–78. https://doi.org/10.1377/hlthaff.20.6.64 https://doi.org/10.1377/hlthaff.20.6.64

Wallace, A., Dietz, V., & Cairns, K. L. (2009). Integration of immunization services with other health interventions in the developing world: What works and why? Systematic literature review. Tropical Medicine & International Health , 14(1), 11–19. https://doi.org/10.1111/j.1365-3156.2008.02196.x https://doi.org/10.1111/j.1365-3156.2008.02196.x

Walston, S. L., Kimberly, J. R., & Burns, L. R. (1996). Owned vertical integration and health care: Promise and performance. Health Care Management Review , 21(1), 83–92. https://doi.org/10.1097/00004010-199602110-00009 https://doi.org/10.1097/00004010-199602110-00009

Wan, T. T., Lin, B. Y. J., & Ma, A. (2002). Integration mechanisms and hospital efficiency in integrated health care delivery systems. Journal of Medical Systems , 26, 127–143. https://link.springer.com/article/10.1023/A:1014805909707 https://link.springer.com/article/10.1023/A:1014805909707

Wan, T. T. H., & Wang, B. B. L. (2003). Integrated healthcare networks’ performance: A growth curve modeling approach. Health Care Management Science , 6(2), 117–124. https://doi.org/10.1023/A:1023337203584 https://doi.org/10.1023/A:1023337203584

Watt, N., Sigfrid, L., Legido-Quigley, H., Hogarth, S., Maimaris, W., Otero-Garcıa, L., … Balabanova, D. (2017). Health systems facilitators and barriers to the integration of HIV and chronic disease services: A systematic review. Health Policy and Planning , 32, iv13–iv26. https://doi.org/10.1093/heapol/czw149 https://doi.org/10.1093/heapol/czw149

Weiss, M. E. (1998). Case management as a tool for clinical integration. Advanced Practice Nursing Quarterly , 4(1), 9–15. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/9874932 http://www.ncbi.nlm.nih.gov/pubmed/9874932

WHO. (1978). Declaration of alma-ata (No. WHO/EURO: 1978-3938-43697-61471) . World Health Organization. Regional Office for Europe. Retrieved from https://cdn.who.int/media/docs/default-source/documents/almaata-declaration-en.pdf?sfvrsn=7b3c2167_2 https://cdn.who.int/media/docs/default-source/documents/almaata-declaration-en.pdf?sfvrsn=7b3c2167_2

WHO. (2007). Everybody business: Strengthening health systems to improve health outcomes: WHO’s framework for action . World Health Organization. Retrieved from https://apps.who.int/iris/handle/10665/43918 https://apps.who.int/iris/handle/10665/43918

WHO. (2010). Package of essential noncommunicable disease interventions for primary health care in low-resource settings . Geneva: World Health Organization. Retrieved from https://www.who.int/publications/i/item/9789241598996 https://www.who.int/publications/i/item/9789241598996

WHO. (2016). Strengthening people-centred health systems in the WHO European Region: Framework for action on integrated health services delivery working document . Retrieved from http://www.euro.who.int/en/who-we-are/governance http://www.euro.who.int/en/who-we-are/governance

World Health Organization Maximizing Positive Synergies Collaborative Group, Samb, B., Evans, T., Dybul, M., Atun, R., Moatti, J.-P., … Etienne, C. (2009). An assessment of interactions between global health initiatives and country health systems. Lancet (London, England) , 373(9681), 2137–2169. https://doi.org/10.1016/S0140-6736(09)60919-3 https://doi.org/10.1016/S0140-6736(09)60919-3

Wulsin, L. R., Söllner, W., & Pincus, H. A. (2006). Models of integrated care. The Medical Clinics of North America , 90(4), 647–677. https://doi.org/10.1016/j.mcna.2006.05.005 https://doi.org/10.1016/j.mcna.2006.05.005

Yu, D., Souteyrand, Y., Banda, M. A., Kaufman, J., & Perriëns, J. H. (2008). Investment in HIV/AIDS programs: does it help strengthen health systems in developing countries? Globalization and health , 4, 1–10. Retrieved from https://globalizationandhealth.biomedcentral.com/articles/10.1186/1744-8603-4-8 https://globalizationandhealth.biomedcentral.com/articles/10.1186/1744-8603-4-8

Vikash Kumar and Suk Yin Caroline Cheng are Assistant Professors, Department of Social Work, Northern Michigan University, Marquette, MI, USA. They can be contacted at [email protected]; [email protected].

Harvard-Style Citation

Kumar, V & Cheng, S. (2023) 'A Comparative Literature Review of Integrated Approach in Health Care in High and Low- Middle-Income Countries', Social Development Issues . 46(1) doi: 10.3998/sdi.5294

Show: Vancouver Citation Style | APA Citation Style

Vancouver-Style Citation

Kumar, V & Cheng, S. A Comparative Literature Review of Integrated Approach in Health Care in High and Low- Middle-Income Countries. Social Development Issues. 2023 12; 46(1) doi: 10.3998/sdi.5294

Show: Harvard Citation Style | APA Citation Style

APA-Style Citation

Kumar, V & Cheng, S. (2023, 12 6). A Comparative Literature Review of Integrated Approach in Health Care in High and Low- Middle-Income Countries. Social Development Issues 46(1) doi: 10.3998/sdi.5294

Show: Harvard Citation Style | {% trans 'Vancouver Citation Style' %}

Non Specialist Summary

This article has no summary

  • Systematic review
  • Open access
  • Published: 16 April 2024

Identifying barriers and facilitators to primary care practitioners implementing health assessments for people with intellectual disability: a Theoretical Domains Framework-informed scoping review

  • Paul Caltabiano 1 , 2 ,
  • Jodie Bailie   ORCID: orcid.org/0000-0003-4393-5773 3 , 4 ,
  • Alison Laycock   ORCID: orcid.org/0000-0001-7756-4398 3 ,
  • Bradley Shea 2 , 3 ,
  • Sally Hall Dykgraaf   ORCID: orcid.org/0000-0002-8532-1086 5 ,
  • Nicholas Lennox   ORCID: orcid.org/0000-0002-3201-3186 6 ,
  • Kanchana Ekanayake   ORCID: orcid.org/0000-0003-4324-311X 7 &
  • Ross Bailie   ORCID: orcid.org/0000-0001-5966-3368 8  

Implementation Science Communications volume  5 , Article number:  39 ( 2024 ) Cite this article

312 Accesses

4 Altmetric

Metrics details

Introduction

People with intellectual disability experience poorer health outcomes compared with the general population, partly due to the difficulties of accessing preventive care in primary care settings. There is good evidence that structured annual health assessments can enhance quality of care for people with intellectual disability, and their use has become recommended policy in several high-income countries. However, uptake remains low. The Theoretical Domains Framework (TDF) offers a conceptual structure for understanding barriers to implementation and has been usefully applied to inform implementation of health assessments for other high-need groups, but not for people with intellectual disability. We conducted a scoping review of the literature, using the TDF, to identify barriers and facilitators influencing primary care practitioners’ implementation of annual health assessments for people with intellectual disability as part of routine primary care practice.

This study was conducted according to the JBI methodological approach for scoping reviews. Searches were conducted in Medline (OVID-SP), Embase (OVID-SP), PsycINFO (OVID-SP), CINHAL (EBSCO), Scopus (Elsevier) and Web of Science (Clarivate) for relevant peer-reviewed publications up to May 2023. Screening, full-text review and data extraction were completed by two independent reviewers. Data were extracted and mapped to the TDF to identify relevant barriers and facilitators.

The search yielded 1057 publications, with 21 meeting the inclusion criteria. Mapping data to the TDF, the most frequently identified domains were (a) environmental context and resources, (b) skills, (c) knowledge and (d) emotion. Predominant factors impacting on implementation included practitioners’ lack of awareness about health assessments and their identified benefits; inadequate training and experience by practitioners in the delivery of health assessments for people with intellectual disability; insufficient time to provide health assessments; and practitioner burnout.

Using a theory-informed behavioural framework, our review aids understanding of the barriers and facilitators to improving the implementation of health assessments as part of routine care for people with intellectual disability. However, there is a clear need for further qualitative research to examine the perceptions of primary care practitioners regarding implementation barriers and facilitators to health assessments in general, including views from practitioners who are not currently undertaking health assessments.

Peer Review reports

Contributions to the literature

Using a theory-informed behavioural framework, this scoping review systematically identifies and categorises barriers and facilitators affecting primary care practitioners’ implementation of structured annual health assessments for people with intellectual disability.

Barriers and facilitators to implementation were most frequently mapped to the following framework domains: (a) environmental context and resources, (b) skills, (c) knowledge and (d) emotion.

There is a need for further qualitative research to examine the perceptions of primary care practitioners regarding implementation barriers and facilitators to health assessments in general, and to ensure that the views of primary care practitioners not currently providing health assessments are investigated.

People with intellectual disability experience higher rates of mortality [ 1 ] and morbidity [ 2 ] compared with the general population. These additional health burdens are present across the life-course and are often ineffectively managed or under-recognised [ 3 ]. Inadequate access to preventive care is thought to contribute to inequitable health outcomes for people with intellectual disability [ 4 ].

To address these health disparities, structured comprehensive annual health assessments for people with intellectual disability, delivered in primary care settings, have become a feature of health policies in some high-income countries [ 5 , 6 ]. These assessments are best viewed as a vehicle for improving the delivery of evidence-based preventive care and have been used to target priority population groups, such as people with intellectual disability, the elderly, children and, in Australia, Aboriginal and Torres Strait Islander people.

Multiple publications, including a systematic review that synthesised evidence from 80 studies in the UK [ 7 ], have found that health assessments for people with intellectual disability identify new health needs [ 8 , 9 ], improve the management of existing health needs [ 10 , 11 ] and enable the provision of health promotion [ 8 , 12 , 13 ]. Crucially, patients with intellectual disability who receive regular health assessments have a lower mortality rate than those who do not [ 14 ]. Despite this evidence, uptake of annual health assessments in primary care has been low [ 9 , 15 ].

The Theoretical Domains Framework (TDF) was initially developed and validated by behavioural scientists to identify behavioural barriers and facilitators related to the implementation of evidence-based recommendations among health professionals [ 16 , 17 ]. The TDF, which has 14 theoretical domains and 84 constructs derived through a systematic expert consensus process, provides a basis for understanding the broad set of factors that may influence behaviours (Table 1 ). It has also been used as a framework for synthesising behavioural influences in reviews reporting perceived barriers and facilitators, including: the adoption of prescribing guidelines [ 18 ], the de-implementation of low-value care [ 19 ], and the treatment and transfer of acute stroke patients in emergency care settings [ 20 ].

In addition, the TDF has been used to examine the uptake of health assessments for targeted population groups, such as for people with autism [ 21 ], children [ 22 ] and adults with cardiovascular disease [ 23 ]. However, to date it has not been used to understand determinants of effective implementation of health assessments for people with intellectual disability.

By assessing the published literature against the TDF, we aimed to identify and categorise barriers and facilitators that influence the implementation of structured health assessments for people with intellectual disability as part of routine practice in primary care. We anticipate that our review findings will contribute to a greater understanding of implementation barriers and facilitators and how they operate to influence practitioner behaviour.

Scoping review methodology was selected because our purpose was to systematically identify and characterise the breadth of research that exists around implementation factors, and distinguish the barriers and facilitators to implementation of preventive health assessments [ 24 , 25 ]. This review drew on methodological guidance for scoping reviews from JBI [ 26 ], and was conducted in accordance with a published a priori protocol [ 27 ]. Reporting was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist [ 28 ]. Critical appraisal and risk of bias assessment were not conducted, consistent with JBI methodology for scoping reviews.

Stage 1: research question

The research question was: ‘What are the barriers and facilitators to primary care practitioners implementing comprehensive health assessments as part of routine practice in primary care for people with intellectual disability?’

Stage 2: relevant literature identification

An initial search of Medline (OVID-SP) and Google Scholar was conducted to identify key publications on the topic and develop a list of search terms. A full search strategy for MEDLINE (OVID-SP) was subsequently developed in consultation with an academic librarian (KE) and research experts in the fields of preventive health assessments, primary care and disability (SHD, NL, RB, JB, BS, AL). The search was then systematically repeated in Medline (OVID-SP), Embase (OVID-SP), PsycINFO (OVID-SP), CINHAL (EBSCO), Scopus (Elsevier) and Web of Science (Clarivate). Database searches were conducted on 1 May 2023. The final search strategy can be found in Additional file 1 . Grey literature and theses were not searched.

Stage 3: study selection

All identified citations were uploaded into COVIDENCE [ 29 ], a web-based review platform, and duplicates removed. Following a pilot review, we undertook title and abstract screening and then full-text review using predetermined inclusion and exclusion criteria (Table 2 ). Two reviewers (PC and JB) independently conducted all stages, with disagreements resolved through discussion.

Stage 4: data extraction

A data extraction template, developed within COVIDENCE and based on the scoping review template by JBI, was utilised. The template considered the methodological and design characteristics of each publication, study setting, and factors influencing uptake or implementation of health assessments. The data extraction tool underwent a pilot phase using two randomly selected publications. Following refinement through discussion, the tool was updated before application to the remaining publications (Additional file 2 ). Data extraction was carried out independently by JB and PC.

Stage 5: data analysis and presentation

As data were extracted, JB and PC independently deductively coded according to the single most relevant TDF domain. To do this, JB and PC read the whole publication, and then line-by-line considered the relevance to the definitions of each domain, attributing the data to the most relevant domain. To guide the data extraction and coding we developed a code book a priori . This code book was updated iteratively throughout the data extraction and analysis process by PC and JB. To facilitate consensus for coding extracted data to the most relevant TDF domain, JB and PC articulated their understanding of the coded text (i.e. key meaning) and justified their rationale for selecting the TDF domain by writing notes. JB and PC meet regularly, and resolved through discussion any differences in understanding of the most relevant domain the data should be coded to. Examples of data coded and categorised is provided in Table 3 .

Data coded to TDF domains were analysed in a recursive process that followed the steps of content analysis outlined by Elo and Kyngas [ 35 ]. Specifically:

PC and JB independently immersed themselves in the extracted data, reading and re-reading publications to get a sense of the whole, primarily to gain a general understanding of the data that had been deductively coded to TDF domains.

Within each TDF domain, PC and JB coded data as barriers or facilitators, writing notes and headings describing the content. ‘Barriers’ were defined as behaviours that impeded the implementation of health assessments, and ‘facilitators’ those that promoted health assessments. Examples of coded data categorised as a barrier or facilitator are detailed in Table 3 .

Building on the initial categorisation of barriers and facilitators, PC and JB developed higher level ‘factors’ that described the barrier/and or facilitator.

Through a process of comparison, rereading and revisiting source publications to review context, PC and JB refined the barriers, facilitators, and factors within each TDF domain.

During analysis it became apparent that study participants within some publications perceived the same factor differently. Consequently, a TDF domain could be mapped as both a barrier and a facilitator for the same publication. For example, some practitioners within a publication had known of or were already implementing health assessments for people with intellectual disability, whereas others within the same publications were unaware. Throughout this process, PC and JB conferred to resolve any differences in categorisation or perceptions of relevance. This included reflection sessions between PC and JB, and collaboration with authors RB and AL. To ensure consistency, all authors, drawing on their experience, checked the results against their understanding of how targeted preventive health interventions were implemented in primary care, any access barriers to primary care for people with intellectual disability and the TDF itself.

Search results and publication selection

The search yielded 1057 publications. After duplicate removal, title and abstract screening, and full-text review, 21 publications were included as depicted in Fig. 1 .

figure 1

PRISMA-ScR flow diagram

Characteristics of included studies

The characteristics of the 21 included publications, derived from 20 studies, are presented in Table 4 . The majority were qualitative study designs ( n =12). All included publications were undertaken in one of four high-income countries, presented here in descending order by frequency: United Kingdom ( n =14) [ 33 , 34 , 36 , 37 , 38 , 39 , 40 , 41 , 43 , 45 , 46 , 48 , 49 , 50 ], Australia ( n =3) [ 30 , 31 , 44 ], Canada ( n =3) [ 12 , 42 , 47 ], and the Netherlands ( n =1) [ 32 ]. Most were published between 2011 and 2023 ( n =15), with the remaining ( n =6) published between 1996 and 2002. The majority did not specify the rurality of the study setting, but five did include regional or rural perspectives [ 31 , 45 , 48 , 49 , 50 ]. Some publications had the primary care practice as the unit of analysis ( n =8), whereas others included perspectives solely from individual general medical practitioners (GPs) ( n =7), both GPs and practice nurses ( n =5), or practice nurses alone ( n =1). Most publications ( n =13) were set in primary care practices that were already implementing health assessments. Two publications from one study included people with intellectual disability as part of the research team [ 48 , 49 ].

Barriers and facilitators to implementation

In our review of the barriers and facilitators influencing practitioners’ behaviour regarding the implementation of health assessments, data were most frequently coded to the following TDF domains: a) environmental context and resources, b) skills, c) knowledge, and d) emotion. The frequency of each TDF domain is presented in Table 5 .

Domain 1: Knowledge

Factors identified within 13 publications corresponded to the knowledge domain. In the context of this review, this domain encompasses the awareness, or lack thereof, of vital information regarding people with intellectual disability and health assessments. Some practitioners expressed a lack of awareness regarding the adverse health outcomes experienced by people with intellectual disability [ 12 , 32 , 48 ], a lack of understanding about the assessments themselves [ 12 , 31 , 36 ] and unfamiliarity with their proven health benefits [ 30 , 31 , 33 , 45 , 46 , 50 ]. Although some GPs questioned the need for any screening at all in this patient group [ 45 ], others were aware of [ 12 , 30 , 43 , 44 ], and acknowledged the existence [ 31 , 45 ] and benefits of, health assessments [ 30 , 34 ]. More specific barriers included a lack of knowledge regarding precise codes in clinical information systems to identify patients with intellectual disability [ 32 , 50 ], and of evidence-based preventive care guidelines [ 31 ].

Domain 2: Skills

Sixteen publications identified factors corresponding to the skills domain, which in the context of this review refers to practitioners’ perspectives about possessing the training and skills required to perform the health assessments. Communication difficulties as a primary obstacle in conducting the health assessments were identified in six publications [ 30 , 32 , 34 , 41 , 48 ]. For example, practitioners may rely on support workers to communicate with the patient, which has the potential for diminishing the patient’s autonomy and ability to communicate effectively [ 40 ]. Conversely, this same publication suggested that interacting directly with the patient establishes both respect for, and empowerment of, the patient. One practice attempted to overcome barriers to communication by assigning all contact with patients to the member of their staff who had the most skills in, and comfort with, communicating with people with intellectual disability [ 42 ].

Other barriers mapped included both inadequate exposure to people with intellectual disability, and not enough relevant curriculum content throughout medical school as well as a lack of advanced training in this area [ 12 , 31 , 32 , 34 , 45 , 47 , 48 ]. Practitioners also recommended further education on the delivery of care to people with intellectual disability [ 31 , 32 , 33 , 38 , 44 , 47 , 50 ], and on how to conduct their health assessments [ 33 , 34 , 36 ]. There were a number of GPs who expressed the belief that all patients should be treated the same, which simply highlights the lack of training about the need for reasonable adjustments for people with intellectual disability and targeted interventions to ensure access to care [ 12 , 48 , 50 ].

Domain 3: Social/professional role and identity

Factors identified within 10 publications corresponded to the social/professional role and identity domain, which in the context of this review covers the recognition that it is the practitioners’ responsibility to conduct health assessments. While most GPs acknowledged their responsibility to provide medical care to people with intellectual disability, some did not feel that it was their responsibility to undertake a yearly health assessment [ 37 , 43 , 45 ]. Others sought further clarity about the role before committing, as they felt out of their depth [ 30 , 34 ]. Conversely, several practitioners acknowledged that since people with intellectual disability live in the community, the initiation and management of medical care falls within the remit of general practice [ 31 , 32 , 33 , 37 , 45 , 47 , 50 ]. There were contradictory views regarding whose role it was to follow up any abnormal findings or referrals required as part of the health assessment. Some practitioners felt themselves to be responsible in ensuring that these plans are followed up and monitored [ 50 ], whereas others were confused as to whose role this was [ 47 ].

Domain 4: Beliefs about capabilities

Factors identified within seven publications corresponded to the beliefs about capabilities domain, which in the context of this review encompasses practitioners’ level of confidence in their ability to conduct health assessments. Practitioners at times felt unprepared, incompetent and/or lacked confidence in their ability to perform all aspects of the health assessments, thereby creating a barrier to their implementation [ 12 , 32 , 39 , 46 ]. However, as identified in four publications, some practitioners felt comfortable with caring for people with intellectual disability [ 34 ] and believed themselves to be capable of providing adequate care without having a special interest in the patient population [ 12 , 31 , 47 ].

Domain 5: Optimism

Factors identified within nine publications corresponded to the optimism domain, which in the context of this review refers to the general belief that health assessments are worthwhile, without specifying any expected outcomes. Barriers to implementing the health assessments were identified in six publications, specifically practitioners’ scepticism about the value of screening [ 31 , 34 , 45 , 46 , 48 ] and their inability to perceive any associated benefits from providing the assessments [ 30 ]. Conversely, a sense of optimism among practitioners that assessments were beneficial for patients was identified in seven publications [ 12 , 30 , 31 , 33 , 34 , 47 , 48 ].

Domain 6: Beliefs about consequences

Factors identified within 10 publications corresponded to the beliefs about consequences domain, which in the context of this review relates to understanding the potential outcomes of providing health assessments. The majority of publications identified the provision of health assessments as a facilitating factor both for practitioners [ 12 , 32 , 47 ] and for support workers [ 30 ] to gain further knowledge on how best to care for patients with intellectual disability. The assessments were also seen as a means of building collaboration between the parties involved [ 44 , 47 ], and of further developing the practitioner–patient relationship through enhanced continuity of care [ 32 , 47 , 48 ]. Furthermore, there was a common belief among practitioners that assessments specifically lead to an improvement in health outcomes for those patients who utilise them [ 30 , 32 , 44 , 45 , 47 , 48 , 50 ]. However, a perception that more evidence on the benefits of health assessments was required to support their implementation was identified in three publications [ 31 , 32 , 43 ].

Domain 7: Reinforcement

Factors identified within seven publications corresponded to the reinforcement domain, which in the context of this review looks at the incentives needed to influence the implementation of health assessments. Five publications indicated that practitioners believed there is insufficient financial compensation for the extra time required to prepare for and provide these assessments [ 12 , 32 , 38 , 47 , 48 ]. However, in two other publications, these sentiments were contradicted, with participants claiming that there was adequate compensation both to implement health assessments [ 31 ] and to attend the necessary training [ 42 ].

Domain 8: Intentions

Factors identified within nine publications corresponded to the intentions domain, which in the context of this review relates to how inclined practitioners are to provide health assessments to people with intellectual disability. Barriers to this included a perceived lack of willingness to do so [ 47 ], an explicit admission that the provision of health assessments was not a priority [ 42 ] and a general lack of interest in providing care for people with intellectual disability at all [ 30 ]. Additionally, some practices had practitioners attempting to conduct the assessment within a 15-min consultation, thereby demonstrating a lack of intent to provide a comprehensive service [ 36 , 48 ]. Practitioners who were facilitating the implementation of health assessments were driven either by a personal interest [ 33 , 45 , 50 ] or a practice-wide focus [ 42 ]. Practices that intended to implement reasonable adjustments—including the offer of home visits [ 48 ], weekend clinics [ 36 ], greater choice in appointment times, reduced wait times [ 50 ] and the provision of Easy Read heath information [ 39 ]—were identified in four publications.

Domain 9: Goals

A factor identified within one publication corresponded to the goals domain, which indicated that a practice had set a specific goal of providing health assessments to 75% of its patients with intellectual disability within an 18-month period [ 42 ]. This facilitating factor demonstrated a commitment to the goal of promoting the delivery of health assessments and to improving the quality of care to people with intellectual disability.

Domain 10: Memory, attention and decision processes

Factors identified within seven publications corresponded to the memory, attention and decision processes domain. In the context of this review, this domain relates to the ability to remember, or to pay attention to, the relevant information needed to make informed decisions relating to health assessments. Barriers identified in seven publications were associated with actually identifying people with intellectual disability due to the lack of a sufficient pre-existing registry or list of eligible patients on clinical information systems [ 32 , 33 , 36 , 42 , 43 , 48 , 50 ]. One of the publications described a practice that utilised an alert system to inform practitioners about upcoming health assessments. Timely reminders such as this are an excellent mechanism to enhance memory and attention [ 42 ].

Domain 11: Environmental context and resources

Factors identified within 18 publications corresponded to the environmental context and resources domain. In the context of this review, this domain refers to the availability of the resources needed to encourage or discourage the implementation of health assessments. Concerns were raised about the ability of support workers and advocates to contribute effectively to the assessment process due to a lack of clarity about their roles [ 30 ], their unfamiliarity with the patients [ 31 ] and even that their involvement could result in disempowering the patients [ 40 ] or practitioner [ 41 ]. However, the important role that support workers play, both in making patients feel comfortable and in encouraging their acceptance of recommended health interventions, was also recognised [ 31 , 33 , 40 , 41 , 45 , 48 , 50 ]. Some practitioners reported that a lack of support workers [ 30 , 38 ], allied health staff or specialist service providers [ 31 , 32 , 37 , 48 ] posed a barrier to conducting health assessments. These professionals were valued for their ability to enhance the process and reduce the time required to perform health assessments [ 31 , 32 , 33 , 37 , 43 , 45 ]. There was a suggestion from several GPs that physicians who specialise in treating patients with intellectual disability could aid in the identification of patients requiring assessment [ 32 ].

A general lack of resources and inadequate time to support the implementation of health assessments were other barriers indicated by practitioners, as assessments not only take longer than standard consultations but also require additional preparation and training [ 12 , 30 , 31 , 32 , 34 , 38 , 41 , 42 , 47 , 48 ]. Patient-related barriers identified as acting as a deterrent included the perceived lack of demand for health assessments from people with intellectual disability [ 46 ], their limited access to general practice [ 30 ], practitioners’ difficulties in contacting patients [ 48 ] and the need for longer appointments [ 42 ]. Easy access to patient histories [ 31 , 34 ] and to health assessment template scripts [ 30 , 44 , 47 , 48 ], along with electronic compatibility of these templates with existing information systems, were identified as facilitators [ 42 , 47 ].

Domain 12: Social influence

Factors identified within five publications corresponded to the social influence domain, all of which were mapped as facilitators. In the context of this review, this domain relates to interpersonal processes and relationships that influence the implementation of health assessments, such as the encouragement received from colleagues who shared good practices and provided positive reinforcement [ 50 ]. Additional support for practices to conduct the health assessments came from stakeholder groups [ 37 , 47 ] and communities [ 31 , 44 ] and was also mapped as a motivating factor in their implementation.

Domain 13: Emotion

Factors identified within 12 publications corresponded to the emotion domain, which in the context of this review encompasses the complex feelings and attitudes of practitioners regarding the provision of health assessments. Emotions coded as barriers were identified in nine of these publications with burn-out, the most commonly mentioned, appearing in six [ 34 , 37 , 38 , 43 , 45 , 46 ]. Practitioners with an already high workload expressed concerns about feeling overwhelmed by the additional work required to provide health assessments. Conversely, within six publications facilitating factors were identified with the most frequently mentioned being eagerness to perform assessments [ 32 , 47 , 48 , 50 ] and satisfaction with the care that practitioners were able to provide [ 33 , 34 , 47 ]. Other less commonly identified barriers included anxiety about performing health assessments [ 33 ] and an aversion to completing the checklists [ 32 ], along with the fear of stigmatising patients, particularly if they had not yet received a formal diagnosis of intellectual disability [ 32 , 42 ].

Domain 14: Behavioural regulation

Factors identified within five publications corresponded to the behavioural regulation domain, which in the context of this review refers to the self-monitoring and management of implementation strategies that will continuously improve the health assessment process. Barriers relating to organisational factors were identified in two publications. One highlighted the coordination issues that arise from the regular scheduling of these periodic assessments [ 30 ], while the other described a practice’s difficulties in scheduling patients due to the limitations of its clinical information system [ 50 ]. Facilitating factors identified in two publications included the recruitment of a coordinator to a practice to handle the organisation and uptake of health assessments [ 36 , 50 ] and a proposal by another practice to automate its computer system to prompt staff when a patient was due for their next assessment [ 42 ]. Other facilitating factors mapped related to whether practices actively sought [ 33 , 42 ] or responded to feedback from patients and their families. Feedback that was thought to improve the implementation of health assessments was identified in three publications [ 50 ].

This scoping review identified a range of barriers and facilitators that influence the implementation of health assessments in primary care for people with intellectual disability. These were mapped to each of the 14 TDF domains. Potential barriers and facilitators were identified within each domain. The most commonly identified barriers were a lack of awareness regarding the availability and advantages of health assessments specifically targeting individuals with intellectual disability, and concerns about a perceived deficiency in the training and experience of the health care professionals conducting these assessments. Time constraints, lack of availability of staff to support health assessment processes, and practitioner burnout given already high workloads also emerged as barriers. A further barrier to implementation was the inability of many practices to identify the records of patients with intellectual disability in primary care clinical information systems.

Conversely, several facilitators were identified and mapped. Primary care professionals recognised their role in providing health assessments to people with intellectual disability and an eagerness to provide preventive health care. Also identified was a belief in the overall effectiveness of assessments in improving health outcomes, and the potential for these health assessments to facilitate care coordination among practitioners, support personnel and others. Access to resources such as health assessment template scripts, complemented by the electronic compatibility of these templates with existing information systems, was highlighted as pivotal in supporting successful implementation.

The most frequently mapped TDF domains were as follows: (a) environmental context and resources, (b) skills, (c) knowledge and (d) emotion. The predominance of the environmental context and resources domain identified in this review is consistent with other studies that have utilised the TDF to assess barriers and facilitators to accessing preventive health care [ 22 , 23 , 51 ]. It is also in line with contemporary evidence about the importance of taking a systems perspective when implementing interventions [ 52 ]. Under-reported in our review were the domains of (a) goals, (b) behavioural regulation and (c) social influences. Similarly, Atkins and colleagues [ 23 ] undertook a systematic review using the TDF to examine the uptake of health assessments for people aged 40–74 years in the UK and found a paucity of reporting of the TDF domains related to goals and behavioural regulation. Interestingly, our study differed with Atkins and colleagues [ 23 ] in that we found a deficit in the reporting of barriers and facilitators related to social influences whereas they did not. There is a need for further inquiry into these three TDF domains to ensure that primary care practices have a nuanced understanding of the barriers and facilitators to implementation of health assessments for people with an intellectual disability.

Consistent with our review, common findings across studies that have used the TDF to examine uptake of health assessments for other targeted population groups have included the perception that practitioners are inadequately trained in the delivery of comprehensive health assessments [ 22 , 23 ] the belief that screening and preventive care should be performed by specialists in the respective patient population’s field [ 22 , 23 ] and a perceived lack of knowledge about relevant health information relating to the patient group [ 21 , 22 ].

A key finding in our review was that many practitioners identified a lack of skills, knowledge and confidence in providing preventive health care to people with intellectual disability. This is unsurprising given that audits of medical and nursing curricula in Australia revealed that, on average, less than 6 h of teaching time was devoted to intellectual disability throughout any of the degree programmes, with the majority of nursing schools providing none [ 53 , 54 ]. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, established in 2019, found that Australian health professionals often do not have the knowledge, skills and attitudes needed for addressing the health needs of people with intellectual disability [ 55 , 56 ]. However, research indicates that those health professionals who have received training in disability-related knowledge and communication skills feel more positive and confident in delivering care to those with disability [ 57 ].

Although this review included international literature with no date limits applied, there were only 21 publications, derived from 20 studies that met the eligibility criteria. This limited amount of literature also only comes from four high-income countries—the UK, Australia, Canada and the Netherlands. This is likely to be because these countries have policy settings related to the implementation of structured annual health assessments for people with intellectual disability as part of routine practice in primary care, as well as the resources to investigate their impact. For example, in the UK and Australia, there are specific policy directives to strengthen the uptake of health assessments, such as Australia’s National Roadmap to Improve Health Outcomes for People with Intellectual Disability [ 5 ] and the UK’s Direct Enhanced Service [ 6 ].

The need to improve health outcomes for people with intellectual disability is gaining increasing attention. However, even though interventions or actions designed to address known barriers to quality care are more likely to produce change, there have been few interventions based on a systematic assessment of barriers [ 58 , 59 ]. As such, this review provides a foundation for future primary research regarding relevant behavioural change interventions [ 60 ]. In addition, there is a need for more qualitative research that examines the perceptions of primary care practitioners regarding the implementation barriers and facilitators to health assessments in general and that includes the views of primary care practitioners who are not currently undertaking health assessments.

Strengths and limitations

The strengths of our review are as follows: 1) a published a priori protocol; and 2) the rigour of having two reviewers independently conducting screening, full text review and data extraction. Review limitations include: 1) the risk of language bias as only publications in English were included; 2) potentially missing relevant evidence as we excluded grey literature and theses; 3) possible selection bias as more than half of the publications involved practitioners who were already implementing health assessments and so would potentially be more motivated to conduct them; 4) all publications were from high-income countries—potentially reflecting where the policy initiatives have driven related investigation.

The comprehensiveness of our review is contingent upon the scope of the incorporated studies, and these have not all taken a comprehensive approach to investigating barriers and facilitators that hinder or support the implementation of health assessments. Consequently, the insights only present a partial picture of influences on behaviours. To clarify, when a TDF domain is indicated as irrelevant to a certain behaviour, it could stem from the fact that no investigation into the barriers and facilitators related to that domain was conducted in the study, rather than from concrete evidence suggesting its irrelevance. A further limitation is that our coding of the barriers and enablers to the most predominant domain does not account for potential relevance of barriers and enablers across domains.

Conclusions

Using a well-established theory-based framework, this scoping review provides a synthesis of the current literature describing barriers and enablers that impact on the implementation of comprehensive health assessments for people with intellectual disability in the primary care setting. Further inquiry into the TDF domains of (a) goals, (b) behavioural regulations and (c) social influences may be warranted to ensure a comprehensive understanding of what drives and constrains the implementation of health assessments for people with intellectual disability in primary care. These insights provide a foundation for future research to improve the delivery and accessibility of preventive care for people with intellectual disability.

Availability of data and materials

Available on request, by contacting the corresponding author.

Abbreviations

Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews

Theoretical Domains Framework

Trollor J, Srasuebkul P, Xu H, Howlett S. Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open. 2017;7(2):e013489. https://doi.org/10.1136/bmjopen-2016-013489 .

Article   PubMed   PubMed Central   Google Scholar  

Cooper SA, McLean G, Guthrie B, McConnachie A, Mercer S, Sullivan F, et al. Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis. BMC Fam Pract. 2015;16:110. https://doi.org/10.1186/s12875-015-0329-3 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Lennox N, Bain C, Rey-Conde T, Purdie D, Bush R, Pandeya N. Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial. Int J Epidemiol. 2007;36(1):139–46. https://doi.org/10.1093/ije/dyl254 .

Article   PubMed   Google Scholar  

Weise J, Pollack AJ, Britt H, Trollor JN. Who provides primary health care for people with an intellectual disability: General practitioner and general practice characteristics from the BEACH dataset. J Intellect Dev Disabil. 2017;42(4):416–21. https://doi.org/10.3109/13668250.2016.1250252 .

Article   Google Scholar  

Australian Goverment Department of Health and Aged Care. National Roadmap for Improving the Health of People with Intellectual Disability. Canberra: Commonwealth of Australia; 2021. https://www.health.gov.au/our-work/national-roadmap-for-improving-the-health-of-people-with-intellectual-disability . Accessed 17 Feb 2024 .

Google Scholar  

National Health Service. Primary Medical Services (Directed Enhanced Services) Directions. NHS England; 2023. https://www.gov.uk/government/publications/primary-medical-services-directed-enhanced-services-directions . Accessed 17 Feb 2024 .

Cantrell A, Croot E, Johnson M, Wong R, Chambers D, Baxter SK, et al. Access to primary and community health-care services for people 16 years and over with intellectual disabilities: a mapping and targeted systematic review. Health Serv Deliv Res. 2020; https://doi.org/10.3310/hsdr08050 .

Cooper SA, Morrison J, Allan LM, McConnachie A, Greenlaw N, Melville CA, et al. Practice nurse health checks for adults with intellectual disabilities: a cluster-design, randomised controlled trial. Lancet Psychiatry. 2014;1(7):511–21. https://doi.org/10.1016/s2215-0366(14)00078-9 .

Bakker-van Gijssel E, Lucassen P, Hartman TO, Van Son L, Assendelft W, van Schrojenstein Lantman-de Valk H. Health assessment instruments for people with intellectual disabilities—A systematic review. Res Dev Disabil. 2017;64:12–24. https://doi.org/10.1016/j.ridd.2017.03.002 .

Article   CAS   PubMed   Google Scholar  

Byrne JH, Lennox NG, Ware RS. Systematic review and meta-analysis of primary healthcare interventions on health actions in people with intellectual disability. J Intellect Dev Disabil. 2016;41(1):66–74. https://doi.org/10.3109/13668250.2015.1105939 .

Carey IM, Shah SM, Hosking FJ, DeWilde S, Harris T, Beighton C, et al. Health characteristics and consultation patterns of people with intellectual disability: a cross-sectional database study in English general practice. Br J Gen Pract. 2016;66(645):e264-ee70. https://doi.org/10.3399/bjgp16X684301 .

Durbin J, Selick A, Casson I, Green L, Perry A, Chacra MA, et al. Improving the quality of primary care for adults with intellectual and developmental disabilities: Value of the periodic health examination. Can Fam Physician. 2019;65(Suppl 1):S66-s72.

PubMed   PubMed Central   Google Scholar  

Byrne JH, Ware RS, Lennox NG. Health actions prompted by health assessments for people with intellectual disability exceed actions recorded in general practitioners’ records. Aust J Prim Health. 2015;21(3):317–20. https://doi.org/10.1071/py14007 .

Kennedy N, Brophy S, Kennedy J, Kerr M. Mortality in adults with learning disabilities with and without a health check: A cohort study. Lancet. 2019;394:S27. https://doi.org/10.1016/S0140-6736(19)32824-7 .

Koritsas S, Iacono T, Davis R. Australian general practitioner uptake of a remunerated Medicare health assessment for people with intellectual disability. J Intellect Dev Disabil. 2012;37(2):151–4. https://doi.org/10.3109/13668250.2012.676636 .

Cane J, O’Connor D, Michie S. Validation of the theoretical domains framework for use in behaviour change and implementation research. Implement Sci. 2012;7:37. https://doi.org/10.1186/1748-5908-7-37 .

Atkins L, Francis J, Islam R, O’Connor D, Patey A, Ivers N, et al. A guide to using the Theoretical Domains Framework of behaviour change to investigate implementation problems. Implement Sci. 2017;12(1):77.

Paksaite P, Crosskey J, Sula E, West C, Watson M. A systematic review using the Theoretical Domains Framework to identify barriers and facilitators to the adoption of prescribing guidelines. Int J Pharm Pract. 2021;29(1):3–11.

Gangathimmaiah V, Evans R, Moodley N, Sen Gupta T, Drever N, Cardona M, et al. Identification of barriers, enablers and interventions to inform deimplementation of low-value care in emergency medicine practice: A protocol for a mixed methods scoping review informed by the Theoretical Domains Framework. BMJ Open. 2022;12(11):e062755.

Craig LE, McInnes E, Taylor N, Grimley R, Cadilhac DA, Considine J, et al. Identifying the barriers and enablers for a triage, treatment, and transfer clinical intervention to manage acute stroke patients in the emergency department: a systematic review using the theoretical domains framework. Implement Sci. 2016;11(1):157.

Davies J, Remington A, Buckley C, et al. “It seems like a luxury to be able to offer that”: Factors influencing the implementation of annual health checks for autistic people in England. Autism. 2023;2023:13623613231182012. https://doi.org/10.1177/13623613231182011 .

Alexander KE, Brijnath B, Mazza D. Barriers and enablers to delivery of the Healthy Kids Check: an analysis informed by the Theoretical Domains Framework and COM-B model. Implement Sci. 2014;9(1):60. https://doi.org/10.1186/1748-5908-9-60 .

Atkins L, Stefanidou C, Chadborn T, Thompson K, Michie S, Lorencatto F. Influences on NHS Health Check behaviours: a systematic review. BMC Public Health. 2020;20(1):1359. https://doi.org/10.1186/s12889-020-09365-2 .

Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(1):143.

Munn Z, Pollock D, Khalil H, Alexander L, McLnerney P, Godfrey CM, et al. What are scoping reviews? Providing a formal definition of scoping reviews as a type of evidence synthesis. JBI Evid Synth. 2022;20(4).

Aromataris E, Munn Z. JBI manual for Evidence Synthesis. 2020. https://synthesismanual.jbi.global . Accessed 17 Feb 2024 .

Caltabiano P, Bailie J, Laycock A, Shea B, Lennox N, Ekanayake K, et al. Applying the Theoretical Domains Framework to identify barriers and facilitators to implementation of comprehensive health assessments for people with an intellectual disability in primary care: a scoping review protocol. OSF; 2023. https://osf.io/7zbwm/ . Accessed 17 Feb 2024 .

Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–73. https://doi.org/10.7326/M18-0850 .

Covidence systematic review software. Melbourne: Veritas Health Innovation; 2020. Available from www.covidence.org . Accessed 14 Apr 2024.

Lennox NG, Brolan CE, Dean J, Ware RS, Boyle FM, Taylor Gomez M, et al. General practitioners’ views on perceived and actual gains, benefits and barriers associated with the implementation of an Australian health assessment for people with intellectual disability. J Intellect Disabil Res. 2013;57(10):913–22. https://doi.org/10.1111/j.1365-2788.2012.01586.x .

Burton H, Walters L. Access to Medicare-funded annual comprehensive health assessments for rural people with intellectual disability. Rural Remote Health. 2013;13(3):2278. https://doi.org/10.22605/RRH2278z .

Bakker-van Gijssel EJ, Olde Hartman TC, Lucassen PL, van den Driessen MF, Dees MK, Assendelft WJ, et al. GPs’ opinions of health assessment instruments for people with intellectual disabilities: a qualitative study. Br J Gen Pract. 2017;67(654):e41-ee8. https://doi.org/10.3399/bjgp16X688585 .

Bollard M. Improving primary health care for people with learning disabilities. Br J Nurs. 1999;8(18):1216. https://doi.org/10.12968/bjon.1999.8.18.6484 .

Macdonald S, Morrison J, Melville CA, Baltzer M, MacArthur L, Cooper SA. Embedding routine health checks for adults with intellectual disabilities in primary care: practice nurse perceptions. J Intellect Disabil Res. 2018;62(4):349–57. https://doi.org/10.1111/jir.12475 .

Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107–15. https://doi.org/10.1111/j.1365-2648.2007.04569.x .

Anderson K, Jones J. Improving annual health checks for service users. Learn Disabil Pract. 2015;18(9):18. https://doi.org/10.7748/ldp.18.9.18.s24 .

Bond L, Kerr M, Dunstan F, Thapar A. Attitudes of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes. J Intellect Disabil Res. 1997;41(Pt 5):391–400. https://doi.org/10.1111/j.1365-2788.1997.tb00726.x .

Chambers R, Milsom G, Evans N, Lucking A, Campbell I. The primary care workload and prescribing costs associated with patients with learning disability discharged from long-stay care to the community. Br J Learn Disabil. 1998;26(1):9–12. https://doi.org/10.1111/j.1468-3156.1998.tb00039.x .

Chinn D. An empirical examination of the use of Easy Read health information in health consultations involving patients with intellectual disabilities. J Appl Res Intellect Disabil. 2020;33(2):232–47. https://doi.org/10.1111/jar.12657 .

Chinn D, Rudall D. Who is Asked and Who Gets to Answer the Health-Care Practitioner’s Questions When Patients with Intellectual Disabilities Attend UK General Practice Health Checks with Their Companions? Health Commun. 2021;36(4):487–96. https://doi.org/10.1080/10410236.2019.1700440 .

Chinn D. “I Have to Explain to him”: How Companions Broker Mutual Understanding Between Patients with Intellectual Disabilities and Health Care Practitioners in Primary Care. Qual Health Res. 2022;32(8–9):1215–29. https://doi.org/10.1177/10497323221089875 .

Durbin J, Selick A, Casson I, Green L, Spassiani N, Perry A, et al. Evaluating the Implementation of Health Checks for Adults With Intellectual and Developmental Disabilities in Primary Care: The Importance of Organizational Context. Intellect Dev Disabil. 2016;54(2):136–50. https://doi.org/10.1352/1934-9556-54.2.136 .

Kerr M, Dunstan F, Thapar A. Attitudes of general practitioners to caring for people with learning disability. Br J Gen Pract. 1996;46(403):92–4.

CAS   PubMed   PubMed Central   Google Scholar  

Lennox NG, Green M, Diggens J, Ugoni A. Audit and comprehensive health assessment programme in the primary healthcare of adults with intellectual disability: a pilot study. J Intellect Disabil Res. 2001;45(Pt 3):226–32. https://doi.org/10.1046/j.1365-2788.2001.00303.x .

McConkey R, Moore G, Marshall D. Changes in the Attitudes of GPs to the Health Screening of Patients with Learning Disabilities. J Learn Disabil. 2002;6(4):373–84. https://doi.org/10.1177/146900470200600404 .

McConkey R, Taggart L, Kane M. Optimizing the uptake of health checks for people with intellectual disabilities. J Intellect Disabil. 2015;19(3):205–14. https://doi.org/10.1177/1744629514568437 .

Shooshtari S, Temple B, Waldman C, Abraham S, Ouellette-Kuntz H, Lennox N. Stakeholders’ Perspectives towards the Use of the Comprehensive Health Assessment Program (CHAP) for Adults with Intellectual Disabilities in Manitoba. J Appl Res Intellect Disabil. 2017;30(4):672–83. https://doi.org/10.1111/jar.12261 .

Walmsley J. An investigation into the implementation of annual health checks for people with intellectual disabilities. J Intellect Disabil. 2011;15(3):157–66. https://doi.org/10.1177/1744629511423722 .

Michell B. Checking Up On Des: My Life My Choice's research into annual health checks for people with learning disabilities in Oxfordshire. Br J Learn Disabil. 2012;40 https://doi.org/10.1111/j.1468-3156.2012.00742.x .

Wigham S, Bourne J, McKenzie K, Rowlands G, Petersen K, Hackett S. Improving access to primary care and annual health checks for people who have a learning disability: a multistakeholder qualitative study. BMJ Open. 2022;12(12):e065945. https://doi.org/10.1136/bmjopen-2022-065945 .

Sethu S, Lawrenson JG, Kekunnaya R, Ali R, Borah RR, Suttle C. Barriers and enablers to access childhood cataract services across India. A qualitative study using the Theoretical Domains Framework (TDF) of behaviour change. PLoS One. 2021;16(12):e0261308. https://doi.org/10.1371/journal.pone.0261308 .

Whelan J, Fraser P, Bolton KA, Love P, Strugnell C, Boelsen-Robinson T, et al. Combining systems thinking approaches and implementation science constructs within community-based prevention: a systematic review. Health Res Policy Syst. 2023;21(1):85.

Trollor JN, Ruffell B, Tracy J, Torr JJ, Durvasula S, Iacono T, et al. Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught. BMC Med Educ. 2016;16(1):105. https://doi.org/10.1186/s12909-016-0625-1 .

Trollor JN, Eagleson C, Turner B, Salomon C, Cashin A, Iacono T, et al. Intellectual disability health content within nursing curriculum: An audit of what our future nurses are taught. Nurse Educ Today. 2016;45:72–9. https://doi.org/10.1016/j.nedt.2016.06.011 .

Royal Commission into Violence Abuse, Neglect and Exploitation of People with Disability. Public hearing report: public hearing 10 education and training of health professionals in relation to people with cognitive disability. 2022. https://disability.royalcommission.gov.au/public-hearings/public-hearing-10 . Accessed 17 Feb 2024 .

Royal Commission into Violence Abuse, Neglect and Exploitation of People with Disability. Final report of the royal commission into violence, abuse, neglect and exploitation of people with disability. 2023. https://disability.royalcommission.gov.au/publications/final-report . Accessed 17 Feb 2024 .

Smith SE, McCann HP, Dykens EM, Hodapp RM. Chapter six - The disability-training needs of healthcare professionals: Scoping review and new initiatives. Int Rev Res Dev Disabil. 2020;58:219–64. https://doi.org/10.1016/bs.irrdd.2020.07.003 .

Baker R, Camosso-Stefinovic J, Gillies C, Shaw EJ, Cheater F, Flottorp S, et al. Tailored interventions to address determinants of practice. Cochrane Database Syst Rev. 2015;4 https://doi.org/10.1002/14651858.CD005470.pub3 .

Gagliardi AR, Alhabib S. Trends in guideline implementation: a scoping systematic review. Implement Sci. 2015;10(1):1–11. https://doi.org/10.1186/s13012-015-0247-8 .

Michie S, Atkins L, West R. The behaviour change wheel. In: A guide to designing interventions. 1st ed. Great Britain: Silverback Publishing; 2014. p. 1003–10. https://doi.org/10.1186/1748-5908-6-42 .

Chapter   Google Scholar  

Download references

Acknowledgements

We acknowledge Jane Yule for editing and proof-reading support and thank Professor Megan Passey for her comments on an early draft of the manuscript.

This project was completed as a course requirement for the Doctor of Medicine at The University of Sydney’s Faculty of Medicine and Health. JB is supported by the NHMRC Centre for Research Excellence in Disability Health, grant #1116385 and NHMRC Synergy Grant ‘Developing interventions for better life-time mental health for young Australians (aged 15 to 24 years) with disability’, grant #2010290.

Author information

Authors and affiliations.

School of Rural Health, The University of Sydney, Dubbo, Australia

Paul Caltabiano

Sydney Medical School, The University of Sydney, Camperdown, Australia

Paul Caltabiano & Bradley Shea

University Centre for Rural Health, The University of Sydney, Lismore, Australia

Jodie Bailie, Alison Laycock & Bradley Shea

Centre for Disability Research and Policy, The University of Sydney, Camperdown, Australia

Jodie Bailie

Rural Clinical School, Australian National University, ACT, Canberra, Australia

Sally Hall Dykgraaf

Queensland Centre for Intellectual and Developmental Disability, Mater Research Institute, University of Queensland, Brisbane, Australia

Nicholas Lennox

University of Sydney Library, The University of Sydney, Camperdown, Australia

Kanchana Ekanayake

School of Public Health, The University of Sydney, Camperdown, Australia

Ross Bailie

You can also search for this author in PubMed   Google Scholar

Contributions

JB conceived of the study; PC and JB designed the study; JB, PC, KE and RB developed the search terms and database searches with input from NL, SHD and BS. PC and JB independently screened the papers and undertook data extraction, with conflicts resolved through discussion between PC and JB; PC led the analysis and writing of the manuscript. AL provided expert advice regarding the TDF. PC, JB, AL, BS, SHD, NL, KE and RB critically reviewed draft versions of the manuscript, revisions were made in response to their input. PC, JB, AL, BS, SHD, NL, KE and RB gave final approval of the version to be published.

Corresponding author

Correspondence to Jodie Bailie .

Ethics declarations

Ethics approval and consent to participate.

No ethics approval was required and consent to participate is not applicable.

Consent for publication

Not applicable.

Competing interests

The University of Queensland owns one particular targeted preventive health assessment for people with intellectual disability, which is generically mentioned in this manuscript. The university receives licensing fees from organisations using this health assessment. One third of these fees are paid to Professor Nicholas Lennox.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Supplementary material 1., rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Caltabiano, P., Bailie, J., Laycock, A. et al. Identifying barriers and facilitators to primary care practitioners implementing health assessments for people with intellectual disability: a Theoretical Domains Framework-informed scoping review. Implement Sci Commun 5 , 39 (2024). https://doi.org/10.1186/s43058-024-00579-8

Download citation

Received : 29 September 2023

Accepted : 05 April 2024

Published : 16 April 2024

DOI : https://doi.org/10.1186/s43058-024-00579-8

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

  • Health assessments
  • Intellectual disability
  • Primary care
  • Implementation
  • Theoretical domains framework
  • Scoping review

Implementation Science Communications

ISSN: 2662-2211

  • Submission enquiries: Access here and click Contact Us
  • General enquiries: [email protected]

literature review on primary healthcare

Advertisement

Advertisement

Location Analysis of Primary Health Care Centers: A Case Study of Mohalla Clinics in Delhi

  • Original Research
  • Published: 04 April 2023
  • Volume 4 , article number  33 , ( 2023 )

Cite this article

literature review on primary healthcare

  • Kaushal Kumar   ORCID: orcid.org/0000-0001-9313-5657 1  

126 Accesses

Explore all metrics

Global health status has improved over years, yet non-infectious and lifestyle diseases are burgeoning speedily and the danger of transmittable diseases remains incessant. The risks are higher for developing countries due to their limited resources. Primary Health Centers (PHCs) can bring affordable health care to the under-served and unserved. In countries like India, governments have a limited budget for PHCs, and thus, finding the optimal location of PHCs is a difficult yet crucial decision problem. Many theoretical and application-oriented location models have been proposed in the Management Science literature. This article contains simple and useful extensions of the generic maximal coverage location model to address some of the challenges faced by developing nations in delivering universal basic health care. The article also presents numerical illustrations of the models along with a case study. Implementation of the proposed models in northeast Delhi, India, reveals that existing locations for Mohalla clinics are not appropriate for the target populations considered in this case study. Neither they can attract the majority of the households nor the load for primary care on large hospitals is coming down significantly. In northeast Delhi, more sites need to be identified for the PHCs.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price includes VAT (Russian Federation)

Instant access to the full article PDF.

Rent this article via DeepDyve

Institutional subscriptions

literature review on primary healthcare

Similar content being viewed by others

literature review on primary healthcare

Location Models for Public Healthcare Facilities in India

literature review on primary healthcare

A Location Problem for Medically Under-Served Areas in Korea

literature review on primary healthcare

Approaches to Defining Health Facility Catchment Areas in Sub-Saharan Africa

Data availability.

The datasets used for this study were derived from the public domain resources given as follows: https://delhishelterboard.in/main/ ; http://health.delhigovt.nic.in/wps/wcm/connect/doit_health/Health/Home/Directorate+General+of+Health+Services/Aam+Aadmi+Mohalla+Clinics/ .

https://delhishelterboard.in/main/

http://health.delhigovt.nic.in/wps/wcm/connect/doit_health/Health/Home/Directorate+General+of+Health+Services/Aam+Aadmi+Mohalla+Clinics/

Zhang Y, Atkins D (2019) Medical facility network design: User-choice and system-optimal models. Eur J Oper Res 273(1):305–319

Article   Google Scholar  

Kucukyazici B, Zhang Y, Ardestani-Jaafari A, Song L (2020) Incorporating patient preferences in the design and operation of cancer screening facility networks. Eur J Oper Res 287(2):616–632

Church RL, Murray A (2018) Anti-cover. In: Church RL, Murray A (eds) Location covering models. Springer, Cham, pp 107–130

Google Scholar  

Dutta A, Paul Abraham B, Roy R, Seetharaman P (2018) Public health system performance challenges in India: a systems thinking approach. Public Health System Performance Challenges in India: A Systems Thinking Approach (January 24, 2018). George Mason University School of Business Research Paper, 18-4

Chandwani R (2021) Stakeholders in the Indian Healthcare Sector. VIKALPA The Journal for Decision Makers 46(2):1–6

Atun R, De Andrade LOM, Almeida G, Cotlear D, Dmytraczenko T, Frenz P, Garcia P, Gómez-Dantés O, Knaul FM, Muntaner C et al (2015) Health-system reform and universal health coverage in Latin America. The Lancet 385(9974):1230–1247

Ahmadi-Javid A, Ramshe N (2020) A stochastic location model for designing primary healthcare networks integrated with workforce cross-training. Oper Res Health Care 24:100226

Sah T, Kaushik R, Bailwal N, Tep N (2019) Mohalla clinics in Delhi: A preliminary assessment of their functioning and coverage. Indian Journal of Human Development 13(2):195–210

Lahariya C (2020) Access, utilization, perceived quality, and satisfaction with health services at Mohalla (Community) Clinics of Delhi, India. J Family Med Prim Care 9(12):5872

Vieira IFG, Barros MFD, Cormack A (2019) Hierarchical facility location model for allocating cancer treatment units in interior of Rio de Janeiro. Production 29

Nasrabadi AM, Najafi M, Zolfagharinia H (2020) Considering short-term and long-term uncertainties in location and capacity planning of public healthcare facilities. Eur J Oper Res 281(1):152–173

Hakimi SL (1964) Optimum locations of switching centers and the absolute centers and medians of a graph. Oper Res 12(3):450–459

Gould PR, Leinbach TR (1966) Approach to the geographic assignment of hospital services. Tijdschr Econ Soc Geogr 57(5):203–206

Segall M, Lumb R, Lall V, Moreno A (2017) Healthcare facility location: a DEA approach. Am J Manag 17(6):54–65

Dzator M, Dzator J (2016) Health, emergency facilities and development: locating facilities to serve people and development better. J Dev Areas 50(5):131–142

Afshari H, Peng Q (2014) Challenges and solutions for location of healthcare facilities. Ind Eng Manag 3(2):1–12

Ahmadi-Javid A, Seyedi P, Syam SS (2017) A survey of healthcare facility location. Comput Oper Res 79(Supplement C):223–263

Barasa EW, Molyneux S, English M, Cleary S (2015) Setting healthcare priorities in hospitals: a review of empirical studies. Health Policy Plan 30(3):386–396

Celik Turkoglu D, Erol Genevois M (2020) A comparative survey of service facility location problems. Ann Oper Res 292(1):399–468

Torkestani SS, Seyedhosseini SM, Makui A, Shahanaghi K (2016) Hierarchical facility location and hub network problems: a literature review. Int J Ind Syst Eng 9(special issue on location allocation and hub modeling):1–22

Khodaparasti S, Maleki H, Jahedi S, Bruni M, Beraldi P (2017) Enhancing community based health programs in Iran: a multi-objective location-allocation model. Health Care Manag Sci 20(4):485–499

Bardhan AK, Kumar K (2018) Restructuring primary health care network to maximize utilization and reduce patient out-of-pocket expenses. Asian J Technol Innov 2019(8):122–140

Ershadi MM, Shemirani HS (2019) Using mathematical modeling for analysis of the impact of client choice on preventive healthcare facility network design. Int J Healthc Manag 1–15

Vidyarthi N, Kuzgunkaya O (2015) The impact of directed choice on the design of preventive healthcare facility network under congestion. Health Care Manag Sci 18(4):459–474

Moon ID, Chaudhry SS (1984) An analysis of network location problems with distance constraints. Manage Sci 30(3):290–307

Kumar K (2019) Optimal capacity allocation when patients encounter congestion in primary healthcare network. Int J Math Eng Manag Sci 4(2):400–408

Bagherinejad J, Shoeib M (2018) Dynamic capacitated maximal covering location problem by considering dynamic capacity. Int J Ind Eng Comput 9(2):249–264

Pouraliakbarimamaghani M, Mohammadi M, Mirzazadeh A (2017) A queuing location-allocation model for a capacitated health care system. Scientia Iranica Transaction E, Industrial Engineering 24(2):751

ElKady SK, Abdelsalam HM (2016) A modified particle swarm optimization algorithm for solving capacitated maximal covering location problem in healthcare systems. In: Applications of Intelligent Optimization in Biology and Medicine. Springer, pp 117–133

Ghaderi A (2015) Heuristic algorithms for solving an integrated dynamic center facility location-network design model. Netw Spat Econ 15(1):43–69

Davari S, Kilic K, Naderi S (2016) A heuristic approach to solve the preventive health care problem with budget and congestion constraints. Appl Math Comput 276:442–453

Shishebori D, Yousefi Babadi A, Noormohammadzadeh Z (2018) A lagrangian relaxation approach to fuzzy robust multi-objective facility location network design problem. Scientia Iranica 25(3):1750–1767

Drezner T (2014) A review of competitive facility location in the plane. Logist Res 7(1):114

Church R, ReVelle C (1974) The maximal covering location problem. Pap Reg Sci 32(1):101–118

Daskin MS, Dean LK (2005) Location of health care facilities. Oper Res Health Care 43–76

Moore GC, ReVelle C (1982) The hierarchical service location problem. Manage Sci 28(7):775–780

Syam SS, Côté MJ (2010) A location-allocation model for service providers with application to not-for-profit health care organizations. Omega 38(3–4):157–166

Murray AT (2016) Maximal coverage location problem: impacts, significance, and evolution. Int Reg Sci Rev 39(1):5–27

Heyns AM, van Vuuren JH (2018) Multi-type, multi-zone facility location. Geogr Anal 50(1):3–31

Joshi V (2011) Primary census abstract, Data highlights NCT of Delhi, Census of India - 2011. Technical report, Directorate of Census Operations, Delhi

Dandona L, Dandona R, Kumar GA, Shukla D, Paul VK, Balakrishnan K, Prabhakaran D, Tandon N, Salvi S, Dash A et al (2017) Nations within a nation: variations in epidemiological transition across the states of India, 1990–2016 in the Global Burden of Disease Study. The Lancet 390(10111):2437–2460

DES (2017) Delhi statistical handbook. Government of National Capital Territory of Delhi, India. Technical report, Directorate of Economics and Statistics

DGHS (2017). Annual Report 2016-2017. Technical report, Directorate General of Health Services, Government of National Capital Territory of Delhi

Download references

Acknowledgements

The author would like to thank Prof. Amit Kumar Bardhan and Dr. Arun Kumar Sharma for their valuable inputs and suggestions.

Author information

Authors and affiliations.

Department of Operational Research, University of Delhi, Delhi, India

Kaushal Kumar

You can also search for this author in PubMed   Google Scholar

Corresponding author

Correspondence to Kaushal Kumar .

Ethics declarations

Conflict of interest.

The author declares no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

This article is part of the Topical Collection on Analytics and Artificial Intelligence for Social Goods

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Kumar, K. Location Analysis of Primary Health Care Centers: A Case Study of Mohalla Clinics in Delhi. Oper. Res. Forum 4 , 33 (2023). https://doi.org/10.1007/s43069-023-00204-9

Download citation

Received : 17 May 2022

Accepted : 02 February 2023

Published : 04 April 2023

DOI : https://doi.org/10.1007/s43069-023-00204-9

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

  • Health service
  • Facility location
  • Primary health care
  • Maximal coverage location model
  • Management Science
  • Find a journal
  • Publish with us
  • Track your research

Palliative care in Primary Health Care: an integrative literature review

Affiliation.

  • 1 Universidade Federal de Santa Maria. Santa Maria, Rio Grande do Sul, Brazil.
  • PMID: 34614078
  • DOI: 10.1590/0034-7167-2020-1335

Objectives: to analyze scientific evidence on the implementation and performance of palliative care in Primary Health Care.

Methods: an integrative literature review, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, carried out in the PubMed, SciVerse Scopus and LILACS databases, in December 2020, without a time frame.

Results: 22 original scientific articles were analyzed, 14 classified as evidence level VI. The objective was to understand the experiences and roles of professionals, patients and families on palliative care in Primary Health Care, articles focused on the theme of management and organization of health services and on the importance of educational interventions on the subject.

Final considerations: evidence found relating palliative care in Primary Health Care points to the possibility of this care; health teams work closely with the family and their home, but the need to expand this theme is still perceived.

Publication types

  • Palliative Care*
  • Primary Health Care*
  • Open access
  • Published: 19 April 2024

Prevalence and associated risk factors of resistant hypertension among Chinese hypertensive patients in primary care setting

  • Kilpatrick Kiupak Chan 1 ,
  • Lapkin Chiang 1 , 2 ,
  • Clarence Chuenming Choi 1 ,
  • Yimchu Li 1 &
  • Catherine Xiarui Chen 1  

BMC Primary Care volume  25 , Article number:  120 ( 2024 ) Cite this article

112 Accesses

Metrics details

Introduction

Hypertension (HT) is a major public health problem globally, and it is the commonest chronic disease with a prevalence of 27% among people aged 15 years or above in Hong Kong. There is emerging literature confirmed that patients with resistant hypertension (RHT) give its increased risk for adverse clinical outcomes and higher rate of documented target organ damage. This study aims to identify the prevalence of RHT among Chinese hypertensive patients managed in public primary care setting of Hong Kong and exploring its associated risk factors.

Methodology

This is a cross-sectional descriptive study. Chinese hypertensive patients aged 30 or above with regular follow-up between 1st July 2019 and 30th June 2020 in 10 public primary care clinics under the Hospital Authority of Hong Kong were included. Demographic data, clinical parameters and drug profile of patients were retrieved from its computerized record system. The prevalence of RHT was identified and the associated risk factors of RHT were explored by multivariate logistic regression analysis.

Among the 538 sampled Chinese hypertensive patients, the mean age was 67.4 ± 11.5 years old, and 51.9% were female. The mean duration of hypertension was 10.1 ± 6.4 years, with a mean systolic and diastolic blood pressure of 128.8 ± 12.3 and 72.9 ± 10.8 mmHg respectively. 40 out of 538 patients were found to have RHT, giving an overall prevalence of 7.43%. Four factors were found to be associated with increased risk of RHT, in ascending order of odds ratio: duration of hypertension (OR 1.08), male gender (OR 2.72), comorbid with type 2 diabetes mellitus (T2DM, OR 2.99), and congestive heart failure (CHF, OR 5.39).

The prevalence of RHT among Chinese hypertensive patients in primary care setting of Hong Kong is 7.43%. RHT is more common in male patients, patients with longer duration of hypertension, concomitant T2DM and CHF. Clinicians should be vigilant when managing these groups of patients and provide aggressive treatment and close monitoring.

Peer Review reports

Hypertension (HT) is a major public health problem with a global prevalence of 20–40% [ 1 , 2 ]. In Hong Kong (HK), it is the commonest chronic disease with a prevalence of 27% among people aged 15 years or above [ 3 ], and the second commonest reason for consultation in primary care [ 4 ]. The “rule of halves” has been used to describe the situation in the management of HT that the rates of diagnosis, treatment, and control are all approximately 50% [ 3 , 5 ].

Uncontrolled HT remains one of the most important cardiovascular risk factors in the world for myocardial infarction, heart failure, renal failure and cerebrovascular accidents [ 6 , 7 ]. Resistant Hypertension (RHT) is defined as failure to achieve goal blood pressure (BP), i.e. <140/90 mmHg for overall population and < 130/80 mmHg for patients with diabetes mellitus (DM) or chronic kidney disease (CKD) despite adhering to maximally tolerated doses of three concurrent anti-hypertensive drugs including a diuretic, or requiring four or more concurrent anti-hypertensive drugs [ 8 , 9 , 10 ]. Despite a uniform definition now adopted by the US Joint National Committee [ 8 ], National Institute of Health and Clinical Excellence (NICE) [ 9 ] and the European Society of Cardiology [ 10 ], it is still challenging to estimate the actual prevalence of RHT, for apparent but false RHT due to suboptimal drug adherence [ 11 ] and the presence of white coat effect [ 12 , 13 ] commonly exist in clinical practice. These are plausible explanations for the highly variable prevalence of RHT among studies, ranging from 6.5% in population-based cohorts study in the United Kingdom in 2015 [ 14 ], 7.9% and 8.8% respectively in cross-sectional studies nationwide in Korea [ 15 ] and regionally in Malaysia [ 16 ], 16.9% in Spanish ambulatory blood pressure monitoring registry [ 13 ], to 17% derived from Swedish primary care cardiovascular database [ 17 ].

There is emerging literature analysing the characteristics of patients with RHT given its increased risk for adverse clinical outcomes. When compared with those with white coat resistance, patients with true RHT were younger, more frequently men, smokers, diabetics, and had a longer duration of HT [ 12 ]. They had a higher rate of documented target organ damage including left ventricular hypertrophy, microalbuminuria, and a worse cardiovascular risk profile. High prevalence of diabetes, hyperlipidemia and target organ damage including heart failure, ischemic heart disease and CKD were seen in patients with RHT compared to patients without [ 17 , 18 ].

A large proportion of Chinese patients with essential HT are managed in public primary care clinics of the Hospital Authority of HK (HAHK). While there is emerging literature analysing the characteristics of patients with RHT given its increased risk for adverse clinical outcomes, most of them were performed in the specialist setting and data from primary care is lacking. This study aims to fill this knowledge gap by identifying the prevalence of RHT among Chinese hypertensive patients managed in public primary care setting of HK and exploring its associated risk factors. We believe that early recognition of RHT, identification of its associated risk factors followed by aggressive treatment will help reduce the cardiovascular morbidity and mortality of all HT patients in the long run.

Study design

It is a cross-sectional descriptive study.

There are a total of 7 clusters in HAHK, with Kowloon Central Cluster (KCC) being the largest hospital cluster with a catchment of 1.2 million populations in 2019. Around 200,000 HT patients have regular follow-up (FU) in 10 public primary care clinics in KCC. The diagnosis of HT is based on the recommendations from NICE guideline [ 9 ]. These HT patients have FU every 1–6 months depending on their clinical condition. At least annually they receive blood tests including fasting sugar, lipid and renal function, and urine test for albumin.

In this study, Chinese HT patients age 30 or above with regular FU in these clinics between 1st July 2019 and 30th June 2020 inclusive were included. Age 30 was selected as cut-off since all young onset HT patients below age 30 are referred to specialist to rule out secondary causes.

HT patients with the following characteristics were excluded: (1) misdiagnosed HT such as white coat HT cases; (2) regular FU of HT in specialist out-patient clinics; (3) HT with a secondary cause; (4) ≤1 attendance for FU within the study period; (5) no documented BP within the study period; (6) no annual blood and urine tests done within the study period.

Definition of resistant HT (RHT) and outcome measures

RHT is defined as (1) failure to achieve goal BP of < 140/90 mmHg for overall population and < 130/80 mmHg for patients with DM or CKD despite adhering to maximally tolerated doses of three concurrent antihypertensive drugs preferably including a diuretic, or (2) requiring four or more concurrent antihypertensive drugs use [ 8 , 9 , 10 ]. After ruling out the white coat effect, and ensuring drug adherence as documented in the case notes, patients fulfilling the definition of RHT were identified. The primary outcome is the prevalence of RHT among Chinese hypertensive patients managed in public primary care setting, and the secondary outcome is its associated risk factors from patients’ demographics and clinical parameters.

Sample size calculation

The formula \(n = \frac{{Z_{\alpha /2}^2P\left( {1 - P} \right)}}{{{E^2}}}\) was used to calculate the adequate sample size, where n  = required minimum sample size, α = probability of type I error and Z α = statistic corresponding to level of confidence, P  = expected prevalence obtained from previous studies, and E = level of absolute precision. The estimated prevalence of RHT was used for sample size calculation since it is the primary outcome of this study. According to the literature, the prevalence of resistant HT in the community ranges from 6.5 to 17% [ 4 , 5 , 6 ]. Using α = 0.05 with Z α = 1.96, P  = 9.5%, E = 2.5%, the minimum sample size needed is 528. To allow room for case exclusion, 25% more patients up to 660 is needed for this study.

Data Collection

The list of patients fulfilling the inclusion criteria was retrieved from the Clinical Data Analysis and Reporting System (CDARS) of HAHK. The list of hypertension patients were identified by code K86 (uncomplicated hypertension) and code K87 (complicated hypertension) based on Hong Kong Clinical Terminology Table (HKCTT). The list was then sequenced by their registration numbers, from which the sampled cases were selected based on computer-generated random numbers. The medical records of sampled patients were reviewed by the research team and their relevant data were captured from the Clinical Management System (CMS) of HAHK.

The latest clinic BP reading and antihypertensive regimen of every sampled patient were captured. Clinic BP is measured by self-service automated BP machines used in these primary care clinics, where two consecutive measurements are taken at least 1 min apart with the patient seated. If one of the readings is ≥ 140/90 mmHg, a third measurement is taken during the consultation. The lower of the latter two measurements would be recorded as the clinic BP [ 9 ]. Home BP readings if charted, ambulatory BP readings if performed, and white coat effect if present, were also documented. Antihypertensive drugs are classified into: renin-angiotensin-system inhibitors comprising angiotensin-converting enzyme inhibitors (ACEI) and angiotensin receptor blockers (ARB), beta-blockers (BB), calcium channel blockers (CCB), diuretics, alpha-blockers, central-acting agents and vasodilators. If any of these drugs were not prescribed for BP control but solely for other indications, such as ACEI or ARB for controlling microalbuminuria and proteinuria, and alpha-blockers for relieving lower urinary tract symptoms, they would not be counted in the antihypertensive drug regimen.

Demographic data included age, gender, smoking and drinking status, and clinical characteristics included body mass index (BMI) and duration of HT were recorded. BMI is calculated as [body weight / height 2 ] in kg/m 2 . Duration of HT is rounded off to the nearest 0.5 years after its diagnosis as recorded in the CMS. Levels of serum fasting sugar, lipid profile, creatinine and urine albumin, and electrocardiogram findings if done, were retrieved from CMS. The latest results were recorded if tests had been performed more than once within the study period. The Modification of Diet in Renal Disease Study equation [eGFR = 186×(SCR×0.011)-1.154×(age)-0.203 × (0.742 [if female])×1.233 where SCR = serum creatinine expressed in µmol/L] was used to estimate the glomerular filtration rate (eGFR), expressed in mL/min/1.73 m 2 ( www.kidney.org/content/mdrd-study-equation ). CKD is defined as eGFR < 60 ml/min/1.73m 2 . Comorbidities including DM, hyperlipidemia, stroke, ischemic heart disease (IHD), left ventricular hypertrophy (LVH), congestive heart failure (CHF), atrial fibrillation (AF), peripheral vascular disease (PVD), gout, obstructive sleep apnoea (OSA) and benign prostatic hypertrophy (BPH) were identified by reviewing patients’ medical records in the CMS.

Statistical analysis

All statistical analyses were performed using the Statistical Package for Social Sciences (SPSS version 23). Continuous data are described as mean and standard deviation if the distribution is normal. Categorical data are reported as percentages. For univariate analyses, Student’s t test was used for continuous variables, and Chi-square or Fisher exact tests (if the number of the categorical data ≤5) were used for categorical variables. Independent variables with p  < 0.1 in the univariate analyses were entered into a multivariate logistic regression analysis to identify associated risk factors of RHT expressed as odds ratio (OR). All analyses were performed with 95% confidence intervals (95% CI) and level of significance as p  < 0.05.

A total of 78,812 patients fulfilling the inclusion criteria were identified from the CDARS of HAHK during the study period. Among the randomly sampled 682 HT patients, 144 (21.1%) were excluded due to the following reasons: 1 due to misdiagnosed HT, 17 due to FU in specialist out-patient clinics, 46 due to ≤1 attendance during the study period, 2 due to no documented BP and 78 due to no annual blood and urine done within the study period. No case of HT with a secondary cause was identified. Clinical data of the remaining 538 cases were collected from the CMS and entered into data analysis (Fig.  1 ).

figure 1

Flowchart of study

Table  1 summarized the demographics and characteristics of all included HT patients. Their mean age was 67.4 ± 11.5 years, and 51.9% were female. 14.3% of patients were current smoker, 5.6% were current drinker, while 57.6% were obese. Majority of patients had associated comorbidities, including 40.1% had DM, 80.1% had hyperlipidaemia, 15.4% had CKD, 12.6% had stroke and 10.2% had IHD. The mean duration of HT was 10.1 ± 6.4 years, and the mean systolic and diastolic BP were 128 ± 12.3 and 74 ± 10.8 mmHg respectively. Among them, 40 cases were identified to have RHT, giving a prevalence of 7.43%.

Table  1 also compared the demographic and clinical parameters in patients with and without RHT. There were statistically more male patients (67.5% versus 32.5%) in the RHT group ( p  = 0.011). RHT patients were found to have longer duration of HT than non-RHT patients (13.7 ± 7.4 years versus 9.8 ± 6.2 years, p  = 0.0002). Patients with RHT had statistically higher proportions of comorbidities: DM (65.0% versus 38.2%, p  = 0.001); CKD (32.5% versus 14.1%, p  = 0.002); microalbuminuria (30.0% versus 14.9%, p  = 0.012); CHF (10.0% versus 1.6%, p  = 0.008); and gout (15.0% versus 5.6%, p  = 0.032).

In addition to the seven statistically significant variables associated with RHT, stroke and LVH also had p  < 0.1 and were hence entered into multivariate logistic regression to identify associated risk factors of RHT, as shown in Table  2 . Adjusting all nine variables forward stepwise in the model, increased risk of RHT were statistically associated with four factors, in ascending order of odds ratio: duration of HT (OR 1.08, 95%CI 1.03–1.14), male gender (OR 2.72, 95%CI 1.33–5.56), comorbid with type 2 DM (T2DM) (OR 2.99, 95%CI 1.49-6.00), and CHF (OR 5.39, 95%CI 1.41–20.69).

The duration of HT as an associated risk factor was further analysed as shown in Fig.  2 . Patients with HT over 10 years were nearly twice more likely to have RHT compared to those diagnosed within 10 years, and nearly four times more likely when the duration is over 15 years ( p  = 0.0007).

figure 2

Proportion of RHT among HT patients of different durations

Figure  3 demonstrates the interactions among the other three risk factors associated with RHT. One in ten male HT patients had RHT and this ratio increased to one in six if they were also diabetic. One-third of male HT patients with CHF had RHT, and the risk increased to one in half if the male HT patients had both T2DM and CHF concomitantly ( p  = 0.003).

figure 3

Proportion of RHT among patients with different associated risk factors

Our study found that 7.43% of Chinese hypertensive patients from primary care have RHT. This figure is comparable with those reported from similar studies done in Korea, Malaysia, and the United Kingdom [ 14 , 15 , 16 ], with a prevalence of RHT ranging from 6.5 to 8.8%. Not surprisingly, these figures are much lower than that 14% reported from a study conducted in a secondary care setting [ 19 ]. This discrepancy can be explained by a higher proportion of secondary HT as well as advanced diseases in the specialist setting. In addition, HT patients with multi-comorbidities including T2DM, CKD and CHF, are usually managed in the secondary care, where more antihypertensive drugs are needed to bring their BP to target.

Higher proportion of associated target organ damage were found in RHT patients compared with non-RHT patients in our study. Significantly higher comorbid rates of CKD, microalbuminuria and CHF were noted in the RHT group. The comorbid rates of stroke, IHD and LVH were also higher in the RHT group though the difference was not statistically significant. These findings were similar to those from the Swedish primary care cardiovascular database showing higher frequencies of CKD, CHF and IHD in RHT patients compared to those without [ 17 ], and higher prevalence of IHD (43%) and LVH (40%) observed in RHT patients in another population-based study in Italy [ 18 ]. Complicated HT patients are more refractory to treatment, whereas RHT patients are more prone to develop severe complications, and this vicious cycle indeed underpins the importance of identifying RHT cases early in our daily practice. In this regard, a broader preventive approach to actively screen for target organ damage among HT patients, as well as an aggressive BP control to prevent the development of HT related complications should be promoted, particularly in primary care.

As to the associated risk factors of RHT, our study showed that RHT was more common in hypertensive patients whom were male and had longer duration of HT, which was in line with a large population-based cohort study with exactly the same observation [ 12 ]. In particular, our study revealed that having HT for over 10 years will render the patient two times more likely to be resistant to treatment, and the prevalence will reach four times when the duration is over 15 years. Given the aging population both in HK and worldwide, as well as the finding that the incidence of hypertension is rising faster in young adults than in older adults [ 20 ], HT patients are more likely to endure a longer duration of HT over lifetime, thus rendering them an increased risk of developing RHT in the future.

Our study also demonstrated strong association between T2DM and CHF with RHT, which were consistent with findings from the emerging evidence [ 12 , 17 , 18 ]. This is partially due to the fact that multiple anti-hypertensives are often required to achieve a more stringent BP target of < 130/80 mmHg for T2DM patients. In addition, the presence of insulin resistance and a higher rate of metabolic syndrome in T2DM patients contribute to their being refractory to antihypertensive treatment [ 21 ]. Furthermore, being comorbid with CHF was found to have the strongest association with RHT in our study. Indeed, CHF had been reported to be the most common comorbidity among RHT patients from the Swedish primary care cardiovascular database [ 17 ]. As HT patients with CHF are often put on BB and diuretics as a compelling indication for improving their heart function and alleviating ankle oedema, in addition to the first-line anti-hypertensives such as ACEI or ARB or CCB [ 9 ], it is not surprising that HT patients with CHF may fulfil the definition of RHT more easily. It is alarming to find that the prevalence of RHT would reach 50%, which is seven times higher than that of the overall HT population, if all three risk factors including male gender, comorbid with DM and CHF are present. Given that RHT leads to an increased all-cause mortality and cardiovascular outcomes, special attention should be paid to this high risk group of patients and a more proactive approach with closer monitoring is needed to bring their BP to target.

This is the first study to investigate the prevalence of RHT in primary care setting in HK and has provided important background information on this topic and its associated risk factors. All the clinical data, biochemical measurements and drug profile were retrieved from the computerized system in HA, thus minimizing risk from recall bias or manual errors. That being said, there are several limitations in this study. First, the study was carried out in one single cluster of HA and therefore selection bias might exist. These results from the public primary health care sector might not be applicable to the private sector or secondary care. Second, 78 HT cases (11.4% of the sampled cases) were found to have no annual blood or urine check-up during the study period and were excluded from the data analysis, which might affect the accuracy of the study outcome. Third, owing to the cross-sectional nature of the study, we were unable to adjust for potential unmeasured confounders and hence no temporal or causal relationship could be established.

7.43% of Chinese hypertensive patients managed in primary care were found to have RHT. It is more common in male hypertensive patients and patients with longer duration of HT, and is strongly associated with comorbid T2DM and CHF. Clinicians should be vigilant when managing these groups of patients and take a more proactive approach with closer monitoring as appropriate so as to improve their clinical outcome in the long run.

Data availability

The datasets generated and/or analysed during the current study are not publicly available to protect the confidentiality of participants’ data but are available from the corresponding author upon reasonable request,

Wolf-Maier K, Cooper RS, Banegas JR, et al. Hypertension prevalence and blood pressure levels in 6 European countries, Canada, and the United States. JAMA. 2003;289:2363–9.

Article   PubMed   Google Scholar  

Roger VL, Go AS, Lloyd-Jones DM, et al. Heart Disease and Stroke Statistics–2012 update: a Report from the American Heart Association. Circulation. 2012;125(1):e2–220.

PubMed   Google Scholar  

Department of Health. Report on Population Health Survey 2014/15. Hong Kong SAR: Department of Health; 2017.

Google Scholar  

Lo YYC, Lam CLK, Lam TP, et al. Hong Kong primary care morbidity Survey 2007–2008. Hong Kong Practitioner. 2010;32:17–26.

Marques-Vidal P, Toumilehto J. Hypertension awareness, treatment and control in the community: is the ‘rule of halves’ still valid? J Hum Hypertens. 1997;11:213–20.

Article   CAS   PubMed   Google Scholar  

Lawes CMM, Hoorn SV, Rodgers A. Global burden of blood pressure related disease. Lancet. 2001;371:1513–8.

Article   Google Scholar  

Yusuf S, Hawken S, Ôunpuu S, et al. Effect of potentially modifiable risk factors associated with myocardial infarction in 52 countries (the INTERHEART study): case-control study. Lancet. 2004;364:937–52.

Chobanian AV, Bakris GL, Black HR, et al. Seventh report of the joint national committee on prevention, detection, evaluation, and treatment of high blood pressure. Hypertension. 2003;42(6):1206–52.

National Institute for Health and Clinical Excellence. Hypertension in Adults: Diagnosis and Management. NICE Guideline 136. 2019. https://www.nice.org.uk/guidance/ng136

Cifkova R, Erdine S, Fagard R, et al. ESH/ESC Hypertension Guidelines Committee: practice guidelines for primary care physicians: 2003 ESH/ESC hypertension guidelines. J Hypertens. 2003;21(10):1779–86.

CAS   PubMed   Google Scholar  

Hyman DJ, Pavlik V. Medication adherence and resistant hypertension. J Hum Hypertens. 2015;29:213–8.

de la Sierra A, Segura J, Banegas JR, et al. Clinical features of 8295 patients with resistant hypertension classified on the basis of ambulatory blood pressure monitoring. Hypertension. 2011;57:898–902.

Armario P, Calhoun DA, Oliveras A, et al. Prevalence and clinical characteristics of refractory hypertension. J Am Heart Assoc. 2017;6(12):e007365.

Article   PubMed   PubMed Central   Google Scholar  

Sinnott SJ, Smeeth L, Williamson E, et al. Trends for prevalence and incidence of resistant hypertension: population based cohort study in the UK 1995–2015. BMJ. 2017;358:j3984.

Chia YC, Ching SM. Prevalence and predictors of resistant hypertension in a primary care setting: a cross-sectional study. BMC Fam Pract. 2014;15:131.

Lee KN, Na JO, Choi CU, Lim HE, Kim JW, Kim EJ, Rha SW, Seo HS, Oh DJ, Park CG. Prevalence and characteristics of resistant hypertension at primary clinics in Korea: a nationwide cross-sectional study. Clin Hypertens. 2016;22:4.

Holmqvist L, Boström KB, Kahan T, et al. Prevalence of treatment-resistant hypertension and important associated factors-results from the Swedish Primary Care Cardiovascular Database. J Am Soc Hypertens. 2016;10(11):838–46.

Romano S, Idolazzi C, Fava C, et al. Prevalence and comorbidities of resistant hypertension: a Collaborative Population-based observational study. High Blood Press Cardiovasc Prev. 2018;25(3):295–301.

Jin C-N, Liu M. The prevalence and prognosis of resistant hypertension in patients with heart failure. PLoS ONE. 2014;9(12):e114958.

NCD Risk Factor Collaboration. Worldwide trends in hypertension prevalence and progress in treatment and control from 1990 to 2019: a pooled analysis of 1201 population-representative studies with 104 million participants. Lancet. 2021;398:957–80.

Zhou MS, Schulman IH, Zeng Q. Link between the renin-angiotensin system and insulin resistance: implications for cardiovascular disease. Vasc Med. 2012;17(5):330–41.

Download references

Acknowledgements

We would like to express our sincere gratitude to Hong Kong College of Family Physicins (HKCFP) for her generosity and support.

This study was funded by the Hong Kong College of Family Physicians Research Fellowship. The funding organization had no influence on the design and conduct of the study, data collection, data analysis and interpretation, or write up of the manuscript.

Author information

Authors and affiliations.

Department of Family Medicine and General Outpatient Clinics, Kowloon Central Cluster, Hospital Authority, Kowloon, Hong Kong SAR, China

Kilpatrick Kiupak Chan, Lapkin Chiang, Clarence Chuenming Choi, Yimchu Li & Catherine Xiarui Chen

Department of Family Medicine and General Outpatient Clinics, Queen Elizabeth Hospital, 30 Gascoigne Road, Kowloon, HK SAR, China

Lapkin Chiang

You can also search for this author in PubMed   Google Scholar

Contributions

KK Chan, L Chiang and CX Chen conducted the literature review and designed the study. All authors, including CC Choi and Y Li involved with data acquisition, data analysis and interpretation. KK Chan and L Chiang wrote the first drafts and the final version of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Lapkin Chiang .

Ethics declarations

Ethics approval and consent to participate.

This study was approved by the Research Ethics Committee of Kowloon Central Cluster of Hospital Authority of Hong Kong. (Approval number: KC/KE-20-0260/ER-2). This was a cross sectional descriptive study involving clinical data retrieved from Computerized Medical System (CMS), written informed consent from participants were exempted by Research Ethics Committee of Kowloon Central Cluster of Hospital Authority of Hong Kong. All methods were carried out in accordance with the relevant guidelines and regulations,

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Chan, K.K., Chiang, L., Choi, C.C. et al. Prevalence and associated risk factors of resistant hypertension among Chinese hypertensive patients in primary care setting. BMC Prim. Care 25 , 120 (2024). https://doi.org/10.1186/s12875-024-02366-9

Download citation

Received : 27 June 2023

Accepted : 08 April 2024

Published : 19 April 2024

DOI : https://doi.org/10.1186/s12875-024-02366-9

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

  • Resistant hypertension
  • Risk factors
  • Primary care

BMC Primary Care

ISSN: 2731-4553

literature review on primary healthcare

U.S. flag

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

  • Publications
  • Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

  • Advanced Search
  • Journal List
  • BMC Health Serv Res

Logo of bmchsr

Public-private partnerships in primary health care: a scoping review

Nasrin joudyian.

1 Tabriz Health Services Management Research Center, Iranian Center of Excellence in Health Management, Tabriz University of Medical Sciences, Tabriz, Iran

Leila Doshmangir

2 Social Determinants of Health Research Center, Health Management and Safety Promotion Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran

3 Department of Health Policy& Management, School of Management & Medical Informatics, Tabriz University of Medical Sciences, Tabriz, Iran

Mahdi Mahdavi

4 National Institute of Health Research (NIHR), Tehran University of Medical Sciences, Tehran, Iran

5 Erasmus School of Health Policy and Management (ESHPM), Erasmus University Rotterdam, Rotterdam, The Netherlands

Jafar Sadegh Tabrizi

Vladimir sergeevich gordeev.

6 Institute of Population Health Sciences, Queen Mary University of London, London, UK

7 Department of Infectious Disease Epidemiology, London School of Hygiene & Tropical Medicine, London, UK

Associated Data

All data generated or analysed during this study are included in this published article and its supplementary information files.

The Astana Declaration on Primary Health Care reiterated that PHC is a cornerstone of a sustainable health system for universal health coverage (UHC) and health-related Sustainable Development Goals. It called for governments to give high priority to PHC in partnership with their public and private sector organisations and other stakeholders. Each country has a unique path towards UHC, and different models for public-private partnerships (PPPs) are possible. The goal of this paper is to examine evidence on the use of PPPs in the provision of PHC services, reported challenges and recommendations.

We systematically reviewed peer-reviewed studies in six databases (ScienceDirect, Ovid Medline, PubMed, Web of Science, Embase, and Scopus) and supplemented it by the search of grey literature. PRISMA reporting guidelines were followed.

Sixty-one studies were included in the final review. Results showed that most PPPs projects were conducted to increase access and to facilitate the provision of prevention and treatment services (i.e., tuberculosis, education and health promotion, malaria, and HIV/AIDS services) for certain target groups. Most projects reported challenges of providing PHC via PPPs in the starting and implementation phases. The reported challenges and recommendations on how to overcome them related to education, management, human resources, financial resources, information, and technology systems aspects.

Despite various challenges, PPPs in PHC can facilitate access to health care services, especially in remote areas. Governments should consider long-term plans and sustainable policies to start PPPs in PHC and should not ignore local needs and context.

Achieving the highest possible level of health is a fundamental right for every human being [ 1 ]. Two years ago, 40 years after signing the Declaration of Alma-Ata (1978) [ 2 ], world leaders reinstated that ‘strengthening Primary Health Care (PHC) is the most inclusive, effective and efficient approach to enhance people’s physical and mental health, as well as social well-being’ [ 3 ]. The Astana Declaration on PHC (2018) reiterated that PHC is a cornerstone of a sustainable health system for universal health coverage (UHC) and health-related Sustainable Development Goals. It also called for all stakeholders to work as partners while taking joint action to build stronger and sustainable PHC [ 3 ]. When implementing this Declaration, countries will choose their unique paths towards UHC. Regardless of their choice, all of them would require effective cooperation and involvement of all major stakeholders (i.e., patients, health professionals, the private sector, civil society, local and international partners, and others).

Previous studies have shown that, despite substantial contributions and previous successes, provision of PHC services solely via the public sector providers has its limitation and some potential problems are well-documented (e.g., shortage of human resources, inefficient institutional frameworks, inadequate quality and efficiency due to a lack of competition, particularly in remote and rural areas) [ 4 , 5 ]. In response to these challenges, some suggested that public-private partnerships (PPPs) initiatives could help to make PHC services provision more effective and efficient [ 6 – 12 ]. PPPs are voluntary cooperative arrangements between two and more public and private sectors in which all participants agree to work together to achieve a common purpose or undertake a specific task and to share risks and responsibilities, resources and benefits [ 13 ]. The flexible nature of PPPs provides a framework for developing and adapting existing structures to meet the specific needs of each project [ 14 ]. For instance, among the objectives of PPPs could be the establishment of a sustainable financial system; capacity-building reforms and management reforms in the public and private sectors; preventing unintended outcomes in the growth of the private sector in health; cost control and improving the health of the community; facilitating socio-economic development; improving PHC services coverage, quality, and infrastructure; as well as increasing the demand for health services [ 15 ].

Local support and private initiatives could become viable when improving PHC performance under a PPP, particularly in a situation when PHC does not have the necessary facilities to provide services, the utilisation of PHC services provided by the public sector is low, and there is a lack of effective mechanisms to evaluate and monitor its performance [ 5 ]. Private providers may also play an important role in the management of public health problems, such as malaria, sexually transmitted diseases, and tuberculosis (TB) [ 4 , 16 ]. It was previously shown that among the main reasons for service uptake from private PHC providers were better geographic access, shorter waiting times, more flexible opening hours, easier access to staff consultations and medication, and more confidentiality regarding disease-related symptoms [ 4 , 17 – 20 ]. Moreover, the use of PPPs can significantly reassure and reduce the fear of privatising health care services [ 6 ]. Not surprisingly, PPPs are rapidly expanding and becoming an integral part of effective health interventions [ 21 ]. They have been tested as a means of ensuring the provision of comprehensive PHC service is efficient, effective, and fair [ 22 ]. PPPs are also often perceived as an innovative method that can produce desired results, particularly when the market fails to distribute health benefits to those who need them (i.e., disadvantaged and the poor people in developing countries) [ 23 , 24 ].

Our scoping review aimed to examine evidence on the use of PPPs in the provision of PHC services and answer the following questions: What target groups have been assigned to receive PHC services via PPPs? What kind of PHC services and processes were provided via PPPs? What arrangements or methods have been used to transfer PHC services to a private sector? What are the results of the service delivery using PPPs? What is the experience of PHC service users? What were the lessons learnt?

Data sources and search strategy

Six databases (ScienceDirect, Ovid Medline, PubMed, Web of Science, Embase, and Scopus) were searched between September and October 2018 for studies reporting on PPPs models used in PHC services provision. We used the following search terms: PPP or public-private partnership(s), public-private participation, public-private collaboration, public-private engagement, public-private mix, in combination with PHC or primary health care, primary healthcare, health care, healthcare, public health. A detailed search strategy for each database can be found in Appendix . The publication language was restricted to English. There were no time restrictions. We supplemented our review by a grey literature search conducted using the World Health Organization databases and websites of private health institutions. Additionally, the references of all included papers were searched for articles not identified through electronic searches.

Study selection

The titles and abstracts of documents were assessed against the inclusion and exclusion criteria ( Appendix ) by two co-authors (NJ and LD). Any disagreements were be resolved by a third independent reviewer (JST). References were managed using EndNote X8 (Thomson Reuters, Philadelphia, PA, USA).

Data extraction and synthesis

We extracted the following information from the studies included in the review: setting, objectives, type of study, services, type of model, results, challenge, and recommendation (Table  1 ). Based on extracted data, we identified themes related to challenges, design, and implementation recommendations of PPPs projects in PHC service provision.

Key features of studies included in the review

PPPs Public-Private Partnerships, TB Tuberculosis, NGO non-governmental organisations, PPM Public-Private Mix, PWP Public-Private Workplace Partnership, PNP Public-NGO Partnership

The results of the screening process are shown in Fig.  1 . In total, 3488 documents were screened by title and abstract for possible inclusion in the review. Additional 14 documents were identified through the manual search. After screening all titles and abstracts, the full text of 120 documents was assessed against the eligibility and exclusion criteria, and 61studies were selected and included in the final review (Table ​ (Table1). 1 ). Of 61 selected studies, 32 studies were conducted in Asian countries; 11 studies in African countries; 11 studies in North and South American countries; one study was conducted in several different countries; three studies in the UK; two studies in Switzerland and one study in Australia. Of 61 selected studies, ten (16.3%) were descriptive, nine (14.7%) were qualitative, eight (13.1%) were case studies, eight (13.1%) were intervention studies, eight (13.1%) were reviews, seven (11.5%) were cross-sectional comparative studies, five (8.2%) were cross-sectional studies, three (4.2%) were cohort studies, and three (4.2%) were prospective studies. We observed that reported PPPs fell into one of the three broad categories: PPPs contracted out for basic PHC services, PPPs in health education and promotion programs, and PPPs in services for infectious diseases. Hence, we used this categorisation to summarise our findings.

An external file that holds a picture, illustration, etc.
Object name is 12913_2020_5979_Fig1_HTML.jpg

PRISMA flow chart of study selection

PPPs contracted out for basic PHC services

A wide range of basic PHC services in Iran, England, Pakistan, India, Nigeria, Cambodia, Brazil, Arizona (US) and Bangladesh (i.e., prevention, promotion , and medical care, including maternal and child health care, family planning, environmental health, school health, health education, immunisation services, health promotion, common diseases treatment, malaria management, maternity services, postpartum services , and vaccination against influenza) was outsourced to PPPs and delivered to specific target groups (i.e., children, mothers, pregnant women, industrial workers, poor residents in the remote areas). The provision of these basic PHC services (infrastructure, procurement , and services management) was contracted out to private sector providers to facilitate better access and coverage of the population. The majority of studies reported that the provision of basic PHC services by private sector actors increased access to services, improved aspects of care, and resulted in various positive outcomes [ 5 , 7 , 10 , 12 , 23 , 33 , 39 , 44 – 46 , 49 , 53 , 60 , 64 , 65 ]. However, there was also some criticism as well. For example, Baig et al. [ 6 ] showed that the management of immunisation services, health promotion, disease treatment, and malaria by PPPs could also be seriously inadequate. Mahan et al. [ 35 ] also reported that due to being perceived as having poor quality by the local population, the uptake of institutional and maternal delivery provided in the private hospitals was low despite being offered free of charge.

PPPs in health education and promotion programs

Studies provided evidence regarding successful PPPs project implementation in the field of health education and promotion (i.e., oral health, sexual health, screening programs, and nutrition). For example, a PPP launched in 2010 by the FDI World Dental Federation and the Unilever measurably improved the oral health among children by encouraging children in kindergartens and schools, student mothers and the general population to brush teeth with a fluoride-containing toothpaste at least twice a day [ 11 , 28 ]. The comprehensive Oral Health Program created by the New York Dental College [ 38 ] for preschool children from low-income families and the Central Massachusetts Oral Health Initiative (CMOHI) [ 62 ] in the US for mothers, pregnant women, and children, also increased access to oral health care.

In the field of sexual health in South Africa, the North Star Alliance (a not-for-profit, non-governmental organisation established in 2006) united the transport sector in its response to the AIDS pandemic. It provided healthcare service package in roadside wellness clinics for truck drivers, sex workers, and their clients, as well as individuals from surrounding communities that do not have access to clinics otherwise. They also referred patients with complications to other health facilities in collaboration with the government and other non-governmental organisations [ 31 ]. In Australia, a partnership between the research institutions and the telecommunications service provider was established to promote sexual health. The research institutes created the content of the sexual health campaign sent via text messages, while the telecommunications service provider performed randomisation of eligible mobile advertising subscribers for broadcasting the text messages [ 35 ].

In the field of breast and cervical cancer screening, in the US, the cooperation of a public institution with a group of private physicians, community clinics and hospitals led to a provision of better quality screening services. These included the provision of updated diagnostic services, the dissemination of educational, cultural and general information to low-income groups, racial and ethnic minorities, and senior women [ 36 ]. In South Africa, a package of interventions to prevent cardiovascular diseases among poor citizens was designed and implemented with the participation of the private sector, which had an overall positive reaction of the population [ 69 ]. In the field of mental health screening, a successful project was launched in Iowa (the US) through the Commonwealth Fund’s Assuring Better Child Health and Development II project. This project created a coalition of public and private partners that focused on designing, testing, and identifying best practices for enhancing health care providers’ mental health screening and referrals for all young children and their families, and ensuring effective coordination of assessment, intervention, follow-up, and communication back to the primary care practitioners [ 63 ].

In the field of nutrition, in 2010, in the US, the National Fruit & Vegetable Alliance, United Fresh Produce Association Foundation, the Food Family Farming Foundation, and the Whole Foods Market together launched the School Salad Bars initiative. This program provided resources and support to schools implementing the School Salad Bars initiative to raise awareness of the use of school salad bars, promote the consumption of fruits and vegetables among school students and improve their nutrition. This initiative resulted in an uptake of this program by approximately 700,000 students in 2012 [ 37 ]. Another successful global project was implemented in Asia (China and India), Africa (South Africa), Europe (Germany, United Kingdom ), and Latin America (Brazil and Mexico). It fostered developing healthy diet habits and promoted the adoption of a physically active lifestyle among children, adolescents, women, mothers, and pregnant women [ 54 ].

In the field of health research, a successful PPP in Texas (the US) was established to prevent childhood obesity by focusing research on improvements in children, family, and community health through etiologic, epidemiologic, methodologic, and intervention research [ 55 ]. Other successful partnerships (e.g., Medicines for Malaria Venture and Global Alliance for TB Drug Development) have been implemented to facilitate universal access to essential drugs and health services, accelerate research and development in the fields of vaccines, diagnostics, and drugs for neglected diseases [ 52 ].

PPPs in services for infectious diseases

Studies also provided evidence regarding successful PPPs in the delivery of infectious disease services (i.e., malaria, TB, HIV/AIDS). PPPs in malaria case management in Tanzania and Ethiopia led to successful results and increased benefits among pregnant mothers, infants, and patients with malaria [ 25 , 42 ]. PPPs formed by governments, international donors, and pharmaceutical companies in India and several African countries were also successfully used to control AIDS and provide diagnostic and treatment services to suspects and AIDS patients [ 57 , 61 ]. PPPs were also used for the provision of diagnostic, treatment, and management of TB in Zambia, Vietnam, Indonesia, South India, Nigeria, Kenya, Nepal, Uganda, Korea, Bangladesh, and South Africa [ 4 , 8 , 13 , 20 , 22 , 26 , 29 , 34 , 40 , 41 , 43 , 47 , 50 , 51 , 56 , 58 , 59 , 61 , 66 ]. The following models of partnerships were reported: PPPs, Public-Private Mix (PPM), Public-Private Workplace Partnership (PWP), and Public-NGO Partnership (PNP). PWP and PNP models were used successfully to provide TB services in South Africa. Sites using PWP were reported to have the highest score of all aspects of quality of care (structure, process, and outcomes). PWP and PNP models were similar to solely public providers in terms of process quality, reflecting a very good knowledge of the treatment guidelines among both private and public providers [ 4 ]. PPM was used as a strategic initiative to engage all private and public health care providers in the fight against TB, using international health care standards [ 47 , 71 ]. Unlike PPP, which is based on long-term contracts with risk sharing and decision-making and a high level of collaboration, PPM involves actors from all sectors for non-contractual collaboration with a vertical disease focus [ 72 ]. Overall, evidence suggests that the use of various models of partnerships led to an increase in the TB case detection rates and the success of curative services [ 4 , 8 , 13 , 20 , 22 , 26 , 29 , 34 , 40 , 41 , 43 , 47 , 50 , 56 , 58 , 59 , 61 , 66 ]. Among the mechanisms and tools used to achieve this success were the design of referral forms and treatment cards, the implementation of the referral mechanism, the free distribution of medication , and the encouragement of patients to complete the course of treatment. Only two studies reported that participation of the private sector in TB control and care resulted in below the optimal level [ 29 ] and poor treatment outcomes [ 47 ].

Challenges and recommendations

Despite some positive outcomes and achievements, detailed analysis of studies results showed that partnerships between public and private sectors faced multiple challenges, particularly during the starting and implementation phases. We grouped these challenges into five areas: education, management, human resources, financial resources, and information and technology systems (Table  2 ).

Challenges of Public-Private Partnerships in Primary Healthcare

PPP Public-Private Partnership

In education, among main problems were an inadequate level of knowledge related to testing and treatment procedures and inadequate knowledge for justification of people to participate in collaborative projects by providers [ 38 , 51 , 56 , 61 , 67 ]. In management, challenges encompassed lack of strategic vision and commitment from various partners, poorly defined roles and expectations, difficulties in member coordination, and a lack of leadership skills [ 2 , 9 , 30 , 32 , 47 , 51 , 52 , 58 , 66 , 68 , 70 , 73 ]. In human resources, reported challenges related to a lack of trust between private and public partners, ownership identity, disparities in power, and lack of capacity to undertake non-clinical tasks by staff in private clinical settings [ 9 , 15 , 32 , 38 , 42 , 47 , 51 , 54 , 57 , 61 , 67 , 68 , 70 ]. For financial resources, issues were rooted in inadequate and insecure funding, questions over the long-term sustainability of PPPs, lack of trust in the reimbursement system used by private partners, and not accounting for PPPs in annual budgeting process [ 9 , 15 , 28 , 31 , 40 , 42 , 43 , 49 , 51 , 59 , 62 , 67 , 68 , 70 ]. For information and technology systems, challenges originated from unclear policies and regulations regarding the implementation and evaluation of PPPs, problems with documentation and record-keeping in private sector providers, a weak capacity to collaborate between sectors or implement regulations, information gap and lack of standardisation, and lack of sufficient monitoring due to lack of defined indicators [ 8 – 11 , 15 , 35 , 41 , 46 , 49 , 51 , 53 , 56 , 63 , 67 , 70 ]. Additional challenges arose from low efficiency of the private sector in taking care of the poorest strata of the population, as well as a lack of capacity of both sectors to engage with one another [ 10 , 15 , 46 , 68 ].

Studies also provided recommendations on how to overcome reported challenges and create effective partnerships (Table  3 ). For example, in education this can be done by ensuring that only most up-to-date and evidence-based treatment guidelines are used in both sectors, conducting sensitisation workshops based on needs assessment, as well as developing effective information, education and communication strategies for the communities [ 13 , 26 , 28 , 29 , 34 , 49 , 63 , 68 ]. In management, one could consider to streamline regular communication and coordination between collaborators, encourage commitment and engagement, ensure that there is appropriate legislation that supports the work of PPPs, clarify roles and responsibilities, set realistic goals and objectives, and ensure better coordination of collaboration [ 8 , 9 , 13 , 35 , 39 , 46 , 49 , 53 , 58 , 61 ]. In human resources, it is vital to facilitate good communication between all members of PPPs, encourage a positive attitude towards PPPs, bring strong stakeholders into partnerships, and create a culture of respect, appreciation, and trust [ 9 , 31 , 47 , 51 – 53 , 57 , 74 , 75 ]. For financial resources, it is important to introduce financial incentives, ensure funding sustainability, and identify alternate financial suppliers [ 6 , 28 , 36 , 56 , 59 , 69 , 74 ]. For information and technology systems, one should consider placing quality assurance mechanisms, building appropriate legislative frameworks, setting up monitoring and documentation systems, using digital tools, and strengthening information systems [ 6 , 9 , 13 , 15 , 20 , 54 , 59 , 61 , 63 , 75 ]. To support these efforts, it is important to have some flexibility in PPPs models and complement it by political and community support of PPPs [ 38 , 51 , 53 , 61 , 76 ].

Recommendations for effective Public-Private Partnerships in Primary Healthcare

We examined the global experience of PHC provision via PPPs for basic PHC services, health education and promotion programs, and services for infectious diseases. The majority of PPPs projects facilitated education and health promotion initiatives and were used to increase access and to facilitate the provision of prevention and treatment services (i.e., TB, malaria , and HIV/AIDS) for certain target groups. The challenges of providing PHC via PPPs were reported primarily for the starting and implementation phases of project execution. Reported challenges and recommendations on how to overcome them fell into one of five areas: education, management, human resources, financial resources, and information systems.

To improve the health care delivery system and to overcome the limitations of financial, technical, and human resources aspects, PPPs should be considered for future health reforms [ 3 , 15 , 77 ]. Governments already see the potential for private sector involvement in improving public health and PHC services delivery [ 74 , 78 ], as they can bring benefits to the health care system, population health, and can lead to direct and indirect costs savings [ 79 ]. They also provide an opportunity for mutual learning between colleagues by stimulating the creation of new knowledge and infrastructure, increase transparency, which can provide greater accountability, public confidence, and result in a higher quality of care [ 75 , 76 ]. PPPs can lead to improvements in efficiency and effectiveness in service provision and provide a necessary platform for social tests that can enable learning, for example, on how to handle the most unsustainable health problems. However, the opponents of PPPs believe that most PPPs are weak, as developing countries do not have the resources to monitor the quality of provided health services [ 80 , 81 ]. Private medical providers are also accused of self-centred attitudes and non-interference in public works. However, some doctors working for the private sector might be willing to take part in partnerships to be able to fight TB and provide HIV/AIDS services for the target population together with the public sector employees and other health sector representatives. The role of private doctors also needs to be carefully analysed and should be supported in its processes when assuming responsibility as primary caregivers [ 61 ].

A partnership should not be formed unless the public sector is strong enough to ensure that it can provide appropriate training and health care services, monitor the outcomes, and have the ability to engage as a partner in PPPs [ 51 ]. Before designing any partnership, clear and achievable public interest goals should be considered. A government structure should then ensure that the goals are in line with the needs of stakeholders in public-private partnerships, and tools and mechanisms to measure progress and success are well-defined [ 82 ]. All partners should also be motivated and provided with incentives to ensure active engagement and participation [ 9 , 51 ]. All individuals who participate in the partnership must have the appropriate level of bargaining power. Hence, to form a common attitude among all partners, sensitisation and persuasion training is also recommended [ 51 , 82 ]. Another important element is transparent communication and accountability of all partners [ 30 , 32 , 81 ].

PPPs can have a better and more stable performance by improving existing healthcare infrastructure, deploying trained human resources, and, most importantly, by better monitoring doctors and professionals and managed organisations [ 67 ]. Although the implementation of a PPP model is not easy, it could be even harder to maintain it [ 51 ]. Sustainability of participatory models is one of the important issues. A lack of financial support and commitment, especially at the level of top executives, are among the issues that can distort the model’s sustainability [ 9 , 51 , 68 ]. Hence, the sustainability of each model of PPP depends on the ability, commitment, collaboration, and communication between the public and private sectors [ 9 , 32 , 51 , 70 ].

Additionally, long-term planning and sustainability policies should be considered, as well as any additional health care costs. Alternative and sustainable funding sources should be identified, and PPPs must be prepared to respond to possible problems, seize the opportunities, anticipate external threats , and be flexible. The weaknesses and deficiencies of any partner involved in PPPs could potentially affect the provision and quality of PHC services. However, ultimately, it is the government and local health authorities that are responsible for PHC services provision to the population [ 27 , 51 , 68 , 82 ].

Limitations

Our study is one of the first to review PHC services provision via PPPs. The key weaknesses of our review should, nonetheless, be kept in mind. First, our findings reflect the results of partnerships in PHC and left studies reporting on PPP use in hospitals and other healthcare sectors outside the scope of this review. Second, we only reviewed studies that were published in the English language, potentially leaving important studies reported and published in other languages.

Despite various challenges, PPPs could provide a good opportunity to facilitate access to health care services, especially in remote areas. However, it should be noted that the success of PPPs depends on the existence of transparency in relationships between partners, PPPs being flexible, having a sustainable financing source, mutual commitment , and the ability of the public sector to monitor and control the quality of services provided by the private sector. Therefore, governments should consider long-term plans and sustainable policies to start such partnerships and learn from the experience of other countries.

Acknowledgements

Not applicable.

Abbreviations

Appendix: Search strategy

Authors’ contributions

DL and JN contributed to all phase of the study. TJS contributed to the initial idea of the study and guided it. MM and VSG made a substantial contribution to the study. All authors revised the manuscript critically for important content and approved the final version.

All stages of the research were funded by the Health Services Management Research Center, Tabriz University of Medical Sciences.

Availability of data and materials

Ethics approval and consent to participate, consent for publication, competing interests.

The authors declare that there is no conflict of interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Contributor Information

Nasrin Joudyian, Email: [email protected] .

Leila Doshmangir, Email: ri.ca.demzbt@lrignamhsoD .

Mahdi Mahdavi, Email: [email protected] .

Jafar Sadegh Tabrizi, Email: [email protected] .

Vladimir Sergeevich Gordeev, Email: [email protected] , Email: [email protected] .

  • Open access
  • Published: 16 April 2024

Review on epidemiology, disease burden, and treatment patterns of IgA nephropathy in select APAC countries

  • Omer Zaidi 1 ,
  • Zhaoli Tang 2 ,
  • Sandipan Bhattacharjee 3 &
  • Kristin Pareja 3  

BMC Nephrology volume  25 , Article number:  136 ( 2024 ) Cite this article

246 Accesses

Metrics details

Immunoglobulin type A (IgA) nephropathy is the most common primary glomerulonephritis (GN) worldwide with higher rates in East and Pacific Asia compared to North America and Europe. Despite high reported prevalence of IgAN in these countries, the overall disease prevalence across Asia is not available. Treatment patterns of IgAN patients across Asian countries have also not been summarized. The aim of this study was to review and summarize evidence on IgA nephropathy prevalence, treatment patterns, and humanistic and economic burden in mainland China, Taiwan, South Korea, Japan, and Australia.

A targeted literature review was conducted in PubMed and local databases in China (including Taiwan), South Korea, Japan, and Australia between January 2010-December 2021. Website literature searches were conducted using Google Scholar and Baidu.

Sixty-nine publications and 3 clinical guidelines were included. Incidence ranged from 0 to 10.7 per 100 000 people per year in Australia, Japan, and Taiwan, and ranged from 6.3 to 24.70% among patients who underwent renal biopsy in mainland China. Prevalence and diagnosis rates ranged from 0 to 72.1% in mainland China, South Korea, Taiwan, Japan, and Australia. Mortality rates in mainland China, South Korea, and Japan varied widely. The top 3 commonly used therapies were angiotensin-converting enzyme inhibitor/angiotensin receptor blockers (0.9-99.6%), corticosteroids (3.5-100%), and immunosuppressants (1.6-85.5%) in Japan, mainland China, and South Korea. Patient quality of life was measured by different tools, and annual hospitalization costs ranged from $1 284.73 to $2 252.12 (2015–2018) in China.

Conclusions

The prevalence of IgA nephropathy among the general population in select countries/regions is not commonly available, despite evidence from studies and clinical guidelines. In addition, it is observed across geographic regions that heterogeneity exists in prevalence rates, and large variations exist in treatment patterns. There is need to fill in these gaps to understand the contributing factors behind the differences through population-based, multi-center, and real-world studies.

Peer Review reports

Immunoglobulin type A nephropathy (IgAN), also known as Berger’s disease, is a kidney disease caused by kidney deposition of immunoglobulin type A (IgA) complexes involving galactose-deficient IgA [ 1 ] and resulting in inflammatory tissue damage [ 2 ]. IgAN affects the kidneys by attacking the glomeruli and is characterized by persistent urinary abnormalities including microscopic hematuria, gross hematuria, and/or proteinuria [ 2 , 3 ]. IgAN is the most common form of biopsy-proven primary glomerulonephritis (PGN) worldwide [ 3 ] and is one of the leading causes of chronic kidney disease (CKD) and end-stage renal disease (ESRD) [ 4 ].

Primary treatments for IgAN include angiotensin-converting enzyme inhibitor/angiotensin receptor blockers (ACEIs/ARBs), corticosteroids, and immunosuppressants [ 1 , 4 ]. These treatments aim to address symptoms and manifestations of IgAN but not the underlying cause. Nearly one-third of IgAN patients develop ESRD within 10 years [ 5 ]. On average, patients with IgAN die 6 years earlier than the general population [ 6 ]. In addition, patients’ quality of life (QoL) is greatly impacted due to pain, fatigue, and poor mental health [ 4 ], and indirect caregiver burden is high due to time spent caring for patients who progress to ESRD. Thus, caregivers’ QoL and psychological well-being can also be negatively impacted [ 7 ].

IgAN prevalence is highest in Asia, intermediate in Europe and the US, and lower in African countries [ 8 ]. The overall global incidence is approximately 2.5 per 100,000 people per year [ 2 ]. A higher prevalence of IgAN is seen in countries where routine screening is practiced [ 4 ]. While geographic variations of IgAN have been studied previously [ 3 , 9 ], few recent studies have focused on regional disease burden differences and treatment patterns in among IgAN patients across Asian countries/regions and Australia.

This review aimed to summarize the disease burden and treatment patterns of IgAN in select countries/regions in the Asia-Pacific region, specifically mainland China, Taiwan, South Korea, Japan, and Australia.

Data sources and search strategy

A targeted literature review (TLR) was conducted to identify relevant literature published from January 2010 to December 2021 for mainland China, Taiwan, South Korea, Australia, and Japan. The earliest year of publication was expanded from 2010 to 2001 to capture evidence more comprehensively on outcomes of interest. Medline and Embase were the primary databases for publications in English. For publications in local languages, WANFANG and China National Knowledge Infrastructure (CNKI) databases were searched for publications in Chinese, Korean Medical Database and Korean Information Service System (KISS) databases were searched for publications in Korean, and Scholarly and Academic Information Navigator (CiNii) was searched for publications in Japanese. Supplementary searches for clinical guidelines, conference proceedings, and websites of governmental and non-governmental organizations were conducted using Google, Baidu (for Chinese sources), and Naver (for Korean sources). Publications cited as references were also considered for screening.

Search terms included IgA nephropathy, Berger’s disease, incidence, prevalence, mortality, quality of life, cost, burden, and treatment. Observational studies, reviews, and registry studies were included in the search. Publications that reported prevalence, incidence, mortality, treatment patterns, guidelines, economic, and humanistic burden were included for data extraction. Search terms in English and local languages are listed in Supplementary Table S1 .

Study selection and data extraction

After the search was conducted and duplicates were removed, the title, abstract, and full texts of the remaining publications were screened. A second reviewer conducted the validation and finalization for publications to be included in the data extraction phase. During screening, the inclusion and exclusion criteria mainly focused on outcomes. Systematic reviews, observational studies including registry/database studies and other real-world studies, annual reports were considered for inclusion. Publications that reported evidence regarding epidemiology (incidence, prevalence, and mortality), humanistic and economic burden, and treatment patterns (treatment guidelines, duration, adherence, persistence, switching, and discontinuation) were included for data extraction. Studies that did not include outcomes of interest were excluded, as were studies with a small sample size (< 25). Strict predefined population, intervention, comparators, outcomes, and study design (PICOS) selection criteria and a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) diagram were not used in this study. Study characteristics, patient characteristics, epidemiological outcomes, disease burden, and treatment patterns were extracted.

Study quality assessment

All eligible studies went through a quality assessment (QA) using a recommended checklist, according to the Center for Reviews and Dissemination Guidance for Undertaking Reviews in Health Care recommendations [ 10 ]. Quality assessment was performed for all eligible articles by two reviewers. The checklist consisted of 9 items excluding basic information for the included studies. Because all publications included in this study were observational studies or reviews, only the non-randomized clinical trial checklist was used for observational studies.

Sixty-nine publications were included for this review, among which 38 were from mainland China (2015–2021) [ 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 ], 15 from Japan (2003–2021) [ 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 ], 10 from South Korea (2010–2020) [ 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 ], 3 from Taiwan (2014–2019) [ 74 , 75 , 76 ], and 3 from Australia (2001–2021) [ 77 , 78 , 79 ]; characteristics of the studies are shown in Supplementary Table S2 . Approximately 83% the publications reported a retrospective study design ( n  = 57). For publications from mainland China, sample sizes ranged from 74 [ 37 ] to 4,367,829 [ 47 ], and male percentages ranged from 37.5% [ 17 ] to 97.3% [ 32 ]. For publications from Japan, sample sizes ranged from 52 [ 53 ] to 270,902 [ 63 ]; the male percentage ranged from 37.1% [ 58 ] to 56.96% [ 52 ]. For publications from South Korea, sample sizes ranged from 25 [ 64 ] to 5,114 [ 67 ]; the male percentage ranged from 36% [ 64 ] to 66.6% [ 73 ]. For publications from Taiwan, sample sizes ranged from 91 [ 75 ] to 7,073 [ 76 ]; the male percentage ranged from 45.9% [ 76 ] to 52.7% [ 75 ]. For publications from Australia, sample sizes ranged from 1,147 [ 78 ] to 2,457 [ 79 ]; the male percentage ranged from 60% [ 77 ] to 69.7% [ 79 ]. The Kidney Disease: Improving Global Outcomes (KDIGO) Clinical Practice Guideline [ 1 ] and 2 country-specific guidelines [ 80 , 81 ] were also included for evidence on treatment patterns.

Sixty-eight journal articles were assessed for study quality (all details of the quality assessment are shown in Supplementary Table S3 ); one white paper was not included in the study quality assessment. Approximately 75% (51/68 articles) were deemed to be of good quality (i.e., without inherent flaws). Few studies reported the incidence/prevalence of IgAN directly and percentage of IgAN were extracted from included studies. The appropriateness of the statistical analysis conducted was not clear or not specified in 5 studies, as they did not define P values and the level of significance for all observations. Across studies, outcome measures were generally considered reliable. However, 33 articles stated that the results could be generalized to routine practice. In one case-control study, the similarity of both groups at the outset of the study was not clear.

Six publications provided evidence on IgAN incidence [ 30 , 61 , 63 , 74 , 77 , 78 ] in Australia ( n  = 2), Japan ( n  = 2), mainland China ( n  = 1), and Taiwan ( n  = 1). Most were cross-sectional observational studies ( n  = 4), and sample sizes ranged from 156 [ 74 ] to 270,902 [ 63 ].

In Australia, IgAN incidence was estimated to be 1.41–10.5 per 100,000 people per year [ 77 , 78 ]. According to Briganti 2001 [ 78 ], IgAN incidence in Australia was lowest (0.0 per 100,000 per year) among male children and highest (10.7 per 100,000 per year) among male adults [ 78 ]. In Japan, only 2 studies reporting incidence data among children were identified. Utsunomiya 2003 [ 63 ] reported an incidence rate of 4.5 per 100,000 per year among 270,902 junior high and elementary school students; Kajiwara 2020 [ 61 ] reported a rate of 3.3 per 100,000 per year among 60,816 junior high and elementary school students. Both publications collected urine samples through a school urinary screening system in students 6 to 15 years old. In mainland China, the incidence rate of IgAN was estimated to be 6.3% among elderly patients who underwent renal biopsy and 24.7% among non-elderly patients who underwent renal biopsy [ 30 ]. In Taiwan, IgAN incidence was estimated to be 5.5 per million per year among the general population (around 23.5 million between 2014 and 2016), based on 1,445 renal biopsy records from a registry database [ 74 ]. In general, IgAN incidence was higher in males (5.7 per 100,000 per year) compared with females (2.9 per 100,000 per year) [ 78 ]. IgAN incidence was not reported in Korean populations.

Prevalence and diagnosis rate

IgAN prevalence among the general population was not reported in the included publications. But one cross-sectional study ( n  = 3,623) reported an IgAN prevalence rate of 0.03% among the general Chinese pediatric population [ 34 ]. Thirty-five publications were identified with diagnosis rates among 2 populations: patients who received renal biopsies and PGN patients [ 13 , 14 , 17 , 18 , 19 , 21 , 22 , 24 , 30 , 31 , 33 , 34 , 35 , 36 , 39 , 40 , 43 , 44 , 45 , 46 , 47 , 48 , 52 , 59 , 67 , 68 , 69 , 70 , 71 , 72 , 74 , 75 , 76 , 79 ]. Twenty-one publications were from mainland China [ 13 , 14 , 17 , 18 , 19 , 21 , 24 , 30 , 31 , 33 , 34 , 35 , 36 , 39 , 40 , 43 , 44 , 45 , 46 , 47 , 48 ], 6 from South Korea [ 67 , 68 , 69 , 70 , 71 , 72 ], 3 from Taiwan [ 74 , 75 , 76 ], 3 from Japan [ 52 , 55 , 59 ], and 1 from Australia [ 79 ]. The majority (88%) were cohort studies ( n  = 17) [ 13 , 21 , 31 , 33 , 35 , 36 , 39 , 40 , 43 , 44 , 45 , 46 , 52 , 68 , 69 , 70 , 71 ] and cross-sectional studies ( n  = 13) [ 14 , 17 , 18 , 19 , 21 , 24 , 34 , 37 , 47 , 59 , 67 , 72 , 74 , 79 ], with the remainder being an annual report [ 76 ], a registry study [ 55 ] and a chart review [ 75 ]. Sample sizes ranged from 33 [ 70 ] to 43,67,829 [ 47 ].

In mainland China, the mean diagnosis rate of IgAN was estimated to be 24.1% among patients undergoing renal biopsies (median: 23.0%; range: 6.3-40.9%) [ 13 , 19 , 21 , 22 , 24 , 30 , 46 ] and 27.3% (median: 27.9%; range: 0-72.1%) [ 14 , 19 , 21 , 33 , 36 , 40 , 43 , 44 , 45 , 48 ] among PGN patients (Fig.  1 a); The mean IgAN diagnosis rate was estimated to be 21.7% (median: 17.5%; 17-30.4%) among children who underwent renal biopsy [ 17 , 18 , 35 ]. In Taiwan, the mean diagnosis rate of IgAN was 12.1% (median: 12.2%; range: 10.8-13.2%) among patients undergoing renal biopsies [ 74 , 75 ] and was reported similar (26%) among PGN patients [ 74 , 76 ] (Fig.  1 b). In South Korea, the mean diagnosis rate was 41% (median: 38.1%; range: 25.8-61.9%) among patients undergoing renal biopsies [ 67 , 69 , 71 , 72 ] and around 51.6% (average of 51.3% and 51.9%) among PGN patients [ 68 , 70 ] (Fig.  1 c). In Japan, Hattori 2016 reported a mean estimated IgAN diagnosis rate of 23% (median: 22.9%) among CKD patients [ 59 ]. In addition, the reported IgAN diagnosis rate among patients who underwent renal biopsy was 31%, with 6.9% in patients aged 65 to 80 years old and 10.5% in patients aged 80 years or older [ 52 , 55 ]. In Australia, Lee 2020 reported an IgAN diagnosis rate of 13% among patients undergoing renal biopsy [ 79 ].

figure 1

IgAN Prevalence in Mainland China, Taiwan and South Korea (Abbreviation: ANS, acute nephritic syndrome; CNS, chronic nephrotic syndrome; NHRI, National Health Research Institute & Taiwan Society of Nephrology; NS, nephritis syndrome(e; PGN, primary glomerulonephritis; RPG, rapidly progressive glomerulonephritis)

Disease progression and mortality

Among included studies, all-cause mortality was mainly reported as deaths due to ESRD. Seven publications from mainland China [ 23 , 26 , 27 , 28 , 29 , 41 , 42 ], 7 from Korea [ 64 , 65 , 66 , 68 , 70 , 71 , 73 ], 4 from Japan [ 50 , 51 , 57 , 62 ], and 1 from Taiwan [ 75 ] reported rate of progression to ESRD in IgAN. These studies varied in the definition of endpoint, patient characteristics, and follow-up duration. In China, the median rate of progression to ESRD was 4.1% [ 28 ] over 6 months, ranged from 1.3 to 15.8% (median: 1.3%) over 40–45 months [ 29 , 41 ], ranged from 6.6 to 15% (median: 8.3%) over 4–10 years [ 23 , 27 , 42 ], and 33% over 15 years [ 42 ]. In Korea, the median rate of progression to ESRD ranged from 2.5 to 39.7% (median: 19%) from 60 to 100 months [ 64 , 65 , 66 , 68 , 70 , 71 , 73 ].

Regarding direct reports on mortality, in mainland China, 0.7% of adult IgAN patients progressed to death according to 1 study of 944 patients from 2003 to 2014 with a median follow-up of 4.2 years [ 23 ]. In South Korea, the median death rate was 5.3% (range: 4.4-5.9%) [ 65 , 66 , 68 ] for 1,364 IgAN patients with a median follow-up of 100 months. In addition, 2 publications reported a standard mortality ratio (expressed as the ratio between the observed and the expected number of deaths in the general population) of 1.43 (95% confidence interval:1.04–1.92) among 1,364 IgAN patients in relation to the general population [ 65 , 68 ]. In Japan, IgAN mortality was estimated to be 0.3 per 100 person-years among non-smokers [ 51 ], 1.3 per 100 person-years among smokers [ 51 ] and 1.2 per 100 person-years among patients who received kidney replacement therapy [ 53 ] based on 2 retrospective studies [ 51 , 53 ]. No mortality data was found among IgAN patients in Taiwan or Australia.

  • Treatment patterns

Twenty publications [ 1 , 11 , 15 , 26 , 27 , 29 , 42 , 49 , 50 , 54 , 56 , 57 , 58 , 60 , 62 , 64 , 68 , 71 , 73 , 81 ] and 3 clinical guidelines reported treatment patterns. Nine from mainland China [ 11 , 15 , 26 , 27 , 28 , 29 , 32 , 41 , 42 ], 8 from Japan [ 49 , 50 , 54 , 56 , 57 , 58 , 60 , 62 ], and 4 from South Korea [ 64 , 68 , 71 , 73 ]. 80% publications were retrospective studies ( n  = 16) [ 11 , 15 , 26 , 27 , 29 , 42 , 49 , 56 , 57 , 58 , 60 , 62 , 64 , 68 , 71 , 73 ]. Sample sizes ranged from 25 [ 64 ] to 2,283 [ 50 ]. The KDIGO [ 1 ] and 2 country-specific treatment guidelines, 1 from mainland China [ 80 ] and 1 from Japan [ 81 ], were identified. No treatment guidelines were identified in Taiwan, South Korea, or Australia.

The KDIGO guidelines (2021 version) provide treatment recommendations for adults and children with IgAN [ 1 ]. The guidelines state that the management of IgAN should be multifaceted, optimized with supportive care, and include ACEIs/ARBs as tolerated or allowed, control blood pressure, minimize cardiovascular risk, and adherence to lifestyle changes including dietary counseling, smoking cessation, weight control, and exercise, as appropriate. The guidelines provide specific treatment recommendations according to the variant forms of IgAN, the level of proteinuria, and high-risk rate for progression after maximal supportive care. The main treatment regimens include ACEIs and ARBs, immunosuppressants, cyclophosphamide, tonsillectomy, and lifestyle modification [ 1 ]. Similar to the KDIGO guidelines, the primary treatment recommendations in the Chinese 2017 guidelines for children with IgAN were glucocorticoids, immunosuppressants, and ACEIs/ARBs [ 80 ]. Japanese 2020 guidelines covered children and adults, with different treatment recommendations based on symptoms and subtype of IgAN (the subgroup classification for adults was based on estimated glomerular filtration rate and proteinuria; symptoms among children were classified as mild or severe) [ 81 ].

In mainland China, 6 studies investigated adult populations [ 15 , 26 , 28 , 29 , 32 , 42 ] (Table  1 ) and 3 investigated pediatric populations [ 11 , 27 , 41 ] (Table  2 ). For drug usage among adult patients, ACEIs/ARBs had the largest median percentage at 66.7% (range: 38-90%) [ 15 , 26 , 28 , 29 , 32 , 42 ], followed by steroids, with median of 36% (corticosteroids/prednisone/intravenous methylprednisolone injection, range: 10-100%) [ 15 , 26 , 28 , 29 , 32 , 42 ] and immunosuppressants (including in combination with steroids), with median of 25.9% (cyclophosphamide, tacrolimus and tripterygium wilfordii, range: 1.6-72%) [ 15 , 26 , 28 , 29 , 32 , 42 ]. Among pediatric patients, immunosuppressants (cyclophosphamide/mycophenolate /Tripterygium wilfordii /leflunomide) were the common drugs recommended, with a median of 64% (range: 1.7–72.2%) [ 11 , 27 , 41 ], followed by ACEIs/ARBs, with a median of 49.5% (range: 2.5-70%) [ 11 , 27 , 41 ] and steroids with a median of 45% (range: 25.3-69.3% as sum of oral prednisone and intravenous methylprednisolone) [ 11 , 27 , 41 ].

In South Korea, 3 publications on adult IgAN patients [ 64 , 68 , 71 ] (Table  1 ) and 1 publication among pediatric patients [ 73 ] (Table  2 ) were identified. Among adults, ACEIs/ARBs were the most common treatments (27.7-83.4%) [ 68 , 71 , 73 ], followed by ACEIs/ARBs and corticosteroid combinations (33.9%) [ 64 ] and corticosteroids alone (12.4-28.8%) [ 68 , 71 , 73 ]. Among pediatric patients, the frequency of immunosuppressant use was 50.2% [ 73 ].

In Japan, 7 publications reported IgAN treatment patterns among adults [ 50 , 54 , 56 , 57 , 58 , 60 , 62 ] (Table  1 ) and 2 publications [ 49 , 54 ] among pediatric patients (Table  2 ). Among adults, ACEIs/ARBs were the most common treatment (25-99.6%) [ 50 , 54 , 56 , 57 , 58 , 60 , 62 ], followed by antiplatelet agents (58.1-96.8%) [ 54 ] and corticosteroid-immunosuppressant combination therapy (1.5-74%) [ 62 ]. Notably, the rate of administering steroid-immunosuppressant combination was only 1.5% in a retrospective cohort study that sampled 1,012 IgAN patients with a mean age of 32.96 ± 12 years [ 56 ]. Among pediatric patients, ACEIs/ARBs were the most frequently administered treatments (0.9-95.7%) [ 49 , 54 ], followed by antiplatelet agents (range: 1.2-82.6%) [ 49 , 54 ] and immunosuppressants (range: 4.6-68.5%) [ 49 ]. The frequency of administering treatments varied greatly across different subgroups. For example, the frequency of administering ACEIs/ARBs ranged from 0.9% for the diffuse mesangial proliferation subgroup ( n  = 108) to 50.9% for the focal mesangial proliferation subgroup ( n  = 173) in 1 retrospective study in Japanese children with IgAN from 1990 to 2004 [ 49 ]. Tonsillectomy or tonsillectomy combined with steroid was mostly reported in Japanese studies, with frequencies ranging from 1 to 66.2% across publications (Table  1 ). This is in accordance with the KDIGO 2021 guidelines’ evidence that supports the routine use of tonsillectomy in Japanese high-risk patients with IgAN [ 1 ]. No publications reporting IgAN treatment patterns were identified for Taiwan or Australia.

Humanistic burden

Four publications in China reported QoL, measured by the 36-Item Short Form Health Survey (SF-36) [ 16 , 25 ], Daily Living Ability Rating Scale (DLARS) [ 37 ], and QoL scale (QOLs) combined with Self-Rating Anxiety Scale (SAS) and Self-Rating Depression Scale (SDS) [ 38 ]. SF-36 scores reflect physical and mental health based on 8 health concepts, including physical and social functioning, role limitations due to physical and emotional problems, mental health, vitality, bodily pain, and general health (GH) perception [ 82 ]. Two publications evaluated the effects of individualized nursing intervention (INI, one improved nursing intervention which costs more time than routine nursing intervention [RNI]) on the psychological mood and QoL among IgAN patients [ 16 , 25 ]. There were two subgroups, the patients in the control group received RNI and patients in the intervention group received INI [ 16 , 25 ]. The mean GH score was 32.16 [ 16 ] among total IgAN patients ( n  = 98; mean age: 32.74 years; male percentage: 50%) in 2017 and 80.15 increasing from 69.93 at baseline [ 25 ] after intervention among total IgAN patients ( n  = 84; mean age: 33.57 years; male percentage: 60.7%) in 2019. In both publications, the intervention groups had higher mean GH scores than that in the control groups (39.47 vs. 24.84 [ 16 ] and 85.73 vs. 74.56 [ 25 ], respectively). Two other prospective studies assessed the effect of INI for IgAN patients [ 37 , 38 ]. Results showed that both mean DLARS and QOLs scores were higher among the intervention group compared to the control group (88.5 vs. 75.7 and 39.5 vs. 24.8, respectively) [ 37 , 38 ]. SAS and SDS scores were also evaluated by Qi 2021 [ 38 ], the mean SAS score decreased more in the intervention group (49.2 ± 6.3 decreased from 62.1 ± 5.8) than that in the control group (57 ± 4.9 decreased from 62.4 ± 6.1) from baseline. Similarly, the mean SDS score decreased more in the intervention group (43.3 ± 5.2 decreased from 56.2 ± 6) than in the control group (52.6 ± 6.4 decreased from 57 ± 6.2) from baseline [ 38 ].

Economic burden

No publications reported indirect costs, but 3 retrospective studies reported hospitalization costs for IgAN patients in China (see Supplementary Figure S1 ) [ 12 , 20 , 47 ]. Hospitalization cost per patient per year is ¥14,900 ($2,252.12; exchange rate of Chinese Yuan [CNY] and US dollar in 2018 was 6.616 [ 83 ]) as reported by Zheng 2018 [ 20 ], and between ¥9,618 ($1,532.26; exchange rate of CNY and US dollar in 2015 is 6.227 [ 83 ]) and ¥10,019 ($1,608.96) as reported by Peng 2015 [ 12 ]. One large database study covering 54.1% of tertiary hospitals in 31 Chinese provinces from 2010 to 2015 reported a hospitalization cost of ¥8,000/$1,284.73 (¥6,000-¥12,000) [ 47 ]. Drug costs accounted for 28.39% of total hospitalization costs, followed by diagnostic testing costs [ 12 ]. Length of stay per patient per year in China ranged from 10 to 14.3 days across 3 publications [ 12 , 20 , 47 ].

To our knowledge, this is the first TLR to summarize the evidence on IgAN disease burden and treatment patterns in mainland China, Taiwan, South Korea, Japan, and Australia. The findings of this review revealed evidence gaps in IgAN epidemiology and humanistic and economic burden. No incidence data was identified in South Korea; no mortality data was identified in Taiwan and Australia; no country/region-specific treatment guidelines were found for Taiwan, South Korea, or Australia; no evidence on treatment patterns from the publications was identified for Taiwan or Australia; and no humanistic burden or economic data was identified except for mainland China.

The IgAN incidence rates among Japanese, Taiwanese, and Australian populations ranged from 0 to 10.7 per 100,000 people per year, higher than the incidence rate reported in a recent systematic literature review (SLR) by Kwon 2021 [ 84 ] (1.29 per 100,000 people per year). Kwon 2021 [ 84 ] is an SLR focusing on US epidemiology, health-related QoL, and the economic burden of IgAN (the included studies were published from January 2010 to June 2020), similar to our study’s objective. Incidence rates among children and teenagers (0-4.5 per 100,000 per year) were similar to the incidence rate in Venezuela (0.03 per 100,000 per year) [ 85 ] and in Italy (0.31 per 100,000 per year) [ 86 ]. The overall prevalence and diagnosis rates of IgAN were similar across selected countries/regions. The diagnosis rates in this review differed from those found in PGN patients and patients who received renal biopsy in Kwon 2021 [ 84 ]; diagnosis rates of IgAN from our results were higher in PGN patients compared with patients who received renal biopsies since renal biopsies were often performed on PGN patients before diagnosis. This applied to both adult and pediatric populations. Compared to the US population in Kwon 2021 [ 84 ], the diagnosis rate among PGN populations in this review was higher (26-72.1% vs. 9.4-19.7%). The diagnosis rate among populations with renal biopsies was also higher (6.3-61.9% vs. 6.3-14.3%). Notably, though not covered by this review, the pathological profile such as Oxford Classification/MEST classification could also shed light upon disease burden, which could be further explored by future studies.

IgAN treatments primarily consisted of ACEIs/ARBs, and high utilization of steroids was found despite mixed evidence on their benefits and safety. There is limited data on IgAN treatment patterns from Taiwan and Australia. Among the publications that reported treatment patterns, few specified drugs’ generic names. The primary treatment patterns reported among select countries/regions in this study are similar to those in US as reported by Kwon 2021 (frequently used therapies were immunosuppressives, corticosteroids, and ACEIs/ARBs) [ 84 ]. Immunosuppressives were used more by children than adults based on data from mainland China, South Korea, and Japan. According to the KDIGO guideline regarding glomerular diseases, the immunosuppressive therapies including azathioprine, cyclophosphamide, calcineurin inhibitors, and rituximab are not recommended for treating IgAN. Mycophenolate mofetil is recommended in Chinese patients and tonsillectomy is recommended to be used in Japanese IgAN patients [ 1 ]. Only Chinese studies reporting SF-36 scores and other metrics were identified. Therefore, more studies on QoL in IgAN patients and caregivers in other regions are warranted.

Evidence of economic burden was identified only from studies in mainland China; Li 2018 was one retrospective national inpatient database study, which included the major hospitals that covers multiple geographic locations [ 47 ], other two studies used the data from one hospital. The mean cost per patient per year reported by Li 2018 is $1,284.73, while one Canadian retrospective study for costs and healthcare resource utilization reported a mean outpatient medication cost per patient per year of Canadian dollar (CAD) $221 in 2016 [ 87 ]. To control medical costs, hospitals in China are undergoing clinical pathway optimization programs [ 12 ].

Publications reported heterogeneous sample populations where IgAN prevalence/diagnosis rates were evaluated. Among 22 publications that reported IgAN prevalence/diagnosis rates, 15 measured IgAN prevalence for patients who underwent renal biopsy and 9 measured IgAN prevalence for patients diagnosed with PGN. Heterogeneity in IgAN prevalence/diagnosis rates may be attributed to differences in study years, patient race/ethnicity, patient age, treatment method, risk factors, diagnosis, and follow-up duration. Other study design–related factors that could introduce bias include sample size and gender composition.

Finally, differences in IgAN prevalence across regions should be noted. County/region-specific healthcare infrastructure and policies influence the epidemiological evidence of IgAN. systematic urine screening programs among individuals with asymptomatic, persistent microscopic hematuria with/without mild proteinuria are commonly implemented in certain countries/regions. These programs facilitate detection of IgAN patients who would otherwise receive a delayed diagnosis or none at all. Countries/regions where screening programs are performed may therefore have higher reported IgAN prevalence. Screening programs play a crucial role in early diagnosis and early treatment [ 88 ].

To our knowledge, this is the first TLR for IgAN in mainland China, Taiwan, South Korea, Japan, and Australia. However, several limitations should be noted. Due to the targeted nature of this review, the search focused on the most relevant literature, and the publications included in this study were prioritized, which potentially have led to an incomplete picture of IgAN-related epidemiology, treatment patterns and disease burden. Across included publications, the sample sizes varied widely and were not always reported. Additionally, this TLR did not weigh the data from included publications; therefore, biases should be considered when comparing outcomes. Studies came from primarily single institutions, and national-level data was not always available for the selected countries/regions. Moreover, this review only covered select Asia-Pacific countries/regions; future reviews and studies in other countries and regions within Asia-Pacific are therefore warranted. Despite these limitations, the evidence gathered in this literature review may help provide a preliminary understanding of the disease burden of IgAN in the Asia-Pacific region.

This TLR summarized evidence on Immunoglobulin type A nephropathy (IgAN) prevalence, treatment patterns, and humanistic and economic burden. Our results suggest that despite the overall scarcity of information in general, evidence on disease burden and treatment patterns has been reported by some studies and several clinical guidelines. The prevalence of IgAN among the general population is not commonly available, while that among patients receiving renal biopsies and diagnosed with PGN is more frequently reported. Heterogeneity in prevalence rates across geographic regions might be explained by differences in initial diagnosis in some regions due to variation in local screening policy and disease management. There is a need to understand how the disease progression differs by those practices. Treatment patterns have been reported mainly in studies from some Asia areas, but geographic variations are noticeable. There is also a need to generate more evidence to shed light upon the possible explanation to the differences in the treatment patterns across geographic regions. In sum, more real-world studies at national levels across select countries/regions are warranted to fill the evidence gaps, particularly regarding incidence, humanistic burden, and economic burden.

The prevalence of IgA nephropathy among the general population in select APAC countries/regions is not commonly available, despite evidence from studies and clinical guidelines. In addition, it is observed across geographic regions that heterogeneity exists in prevalence rates, and large variations exist in treatment patterns. Future studies are needed to fill in these gaps to understand the contributing factors behind the differences through population-based, multi-center, and real-world studies.

Data availability

All data generated or analyzed during this study are included in this published article [and its supplementary information files].

Abbreviations

Angiotensin-converting enzyme inhibitor

Acute nephritic syndrome

Asia Pacific

Angiotensin receptor blockers

Canadian dollar

Chronic kidney disease

China National Knowledge Infrastructure

Chronic nephrotic syndrome

Chinese Yuan

Cyclophosphamide

Daily Living Ability Rating Scale

Diffuse mesangial proliferation

Excerpta Medica Database

End-stage kidney failure

Focal mesangial proliferation

General health

Individualized nursing intervention

The Kidney Disease: Improving Global Outcomes

Korean Information Service System

Mycophenolate mofetil

Not reported

Nephritis syndrome

Primary glomerulonephritis

Population, intervention, comparators, outcomes, and study design

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

Quality assessment

Routine nursing intervention

Rapidly progressive glomerulonephritis

Self-Rating Anxiety Scale

Standard deviation

Self-Rating Depression Scale

36-Item Short Form Health Survey

Systematic literature review

Targeted literature review

Taiwan Society of Nephrology

Working Group for National Survey on Status of Diagnosis and Treatment of Childhood Renal Diseases

Kidney Disease. Improving global outcomes (KDIGO) Glomerular Diseases Work Group. KDIGO 2021 clinical practice guideline for the management of glomerular diseases. Kidney Int. 2021;100(4S):S1–276.

Google Scholar  

National Institute of Diabetes and Digestive and Kidney Diseases. IgA nephropathy [Available from: https://www.niddk.nih.gov/health-information/kidney-disease/iga-nephropathy .

Schena FP, Nistor I. Epidemiology of IgA nephropathy: a global perspective. Semin Nephrol. 2018;38(5):435–42.

Article   PubMed   Google Scholar  

Hassler JR. IgA nephropathy: a brief review. Semin Diagn Pathol. 2020;37(3):143–7.

Zhang H. KDIGO Zhinan Jiedu: IgA shenbing zhiliao[KDIGO guideline interpretation: treatment of IgA nephropathy. Chin J Practical Intern Medicine]. 2012;32(12):925–7.

CAS   Google Scholar  

Jarrick S, Lundberg S, Welander A, Carrero JJ, Hoijer J, Bottai M, et al. Mortality in IgA nephropathy: a nationwide population-based cohort study. J Am Soc Nephrol. 2019;30(5):866–76.

Article   PubMed   PubMed Central   Google Scholar  

Adejumo OA, Iyawe IO, Akinbodewa AA, Abolarin OS, Alli EO. Burden, psychological well-being and quality of life of caregivers of end stage renal disease patients. Ghana Med J. 2019;53(3):190–6.

Woo KT, Chan CM, Mooi CY, LC H, Tan HK, Foo M, et al. The changing pattern of primary glomerulonephritis in Singapore and other countries over the past 3 decades. Clin Nephrol. 2010;74(5):372–83.

Coppo R. Pediatric IgA Nephropathy in Europe. Kidney Dis (Basel). 2019;5(3):182–8.

Centre for Reviews and Dissemination. University of York. Systematic Reviews: CRD’s guidance for undertaking reviews in health care. 2009.

Working Group for National Survey on Status Diagnosis and Treatment of Childhood Renal Diseases. [Multicenter investigation of therapeutic status of children with IgA nephropathy in China]. Zhonghua Er Ke Za Zhi. 2013;51(7):486–90.

Peng Q, Xu G, Zhang C, Fang P. Wuhan Mou sanjia Yiyuan IgA shenbing Shen Chuanci huojian huanzhe linchuang lujing shishi xiaoguo pingjia[Evaluation of clinical pathway implementation effect in patients with IgA nephropathy renal puncture biopsy in a tertiary hospital in Wuhan]. Med Soc. 2015;28(10):18–20.

Zhu Z, Zou Q, Chen Y, Hu F, Bai J, Chao Q, et al. 224 Li Shen Huoti Zuzhi Jiancha De Linchuang lujing Yu Bingli fenxi[Analysis of the clinical pathway and pathologic features of 224 cases of renal biopsy]. Huaxi Med. 2016;31(5):845–9.

Tang L, Yao J, Kong X, Sun Q, Wang Z, Zhang Y, et al. Increasing prevalence of membranous nephropathy in patients with primary glomerular diseases: a cross-sectional study in China. Nephrol (Carlton). 2017;22(2):168–73.

Article   Google Scholar  

Zhou S, Fu J, Liu M, Yang S, Zhou Q, Yu X, et al. The prevalence and risk factors of abnormal circadian blood pressure in patients with IgA nephropathy. Clin Nephrol. 2017;88(12):344–53.

Article   CAS   PubMed   Google Scholar  

Lu H, Xiao L, Lu X, Liang J. Gexinghua huli moshi dui IgA shenbing huanzhe qingxu ji shenghuo zhiliang yingxiang de yanjiu [The effect of personalized nursing mode on the emotion and quality of life of patients with IgA nephropathy]. Contemp Med. 2017;23(5):30–3.

Wang N, Zhu T, Tao Y. Clinicopathological features of pediatric renal biopsies in the plateau regions of China. J Int Med Res. 2018;46(11):4539–46.

Nie S, He W, Huang T, Liu D, Wang G, Geng J, et al. The spectrum of biopsy-proven glomerular diseases among children in China: a national, cross-sectional survey. Clin J Am Soc Nephrol. 2018;13(7):1047–54.

Zhou Q, Yang X, Wang M, Wang H, Zhao J, Bi Y, et al. Changes in the diagnosis of glomerular diseases in east China: a 15-year renal biopsy study. Ren Fail. 2018;40(1):657–64.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Zheng X, Zhang J, Lu C. Xinjiang Weiwuerzu Zizhiqu renmin Yiyuan 2012 ~ 2017nian manxing shenzangbing huanzhe de jibing goucheng ji yiliao feiyong de hengduanmian diaocha [Disease composition and medical expenses of chronic kidney disease in people’s hospital of Xinjiang Uygur Autonomous Region from 2012 to 2017: a cross-sectional survey]. Chin J Evid-Based Med. 2018;18(9):903–6.

Nie P, Chen R, Luo M, Dong C, Chen L, Liu J et al. Clinical and pathological analysis of 4910 patients who received renal biopsies at a single center in Northeast China. Biomed Res Int 26 Mar 2019;2019:6869179.

Su S, Yu J, Wang Y, Wang Y, Li J, Xu Z. Clinicopathologic correlations of renal biopsy findings from northeast China: a 10-year retrospective study. Med (Baltim). 2019;98(23):e15880.

Cai Q, Shi S, Wang S, Ren Y, Hou W, Liu L, et al. Microangiopathic lesions in IgA nephropathy: a cohort study. Am J Kidney Dis. 2019;74(5):629–39.

Chen L, Luodelete M, Dong C, Li B, Zhang W, Nie P, et al. Pathological spectrum of glomerular disease in patients with renal insufficiency: a single-center study in northeastern China. Ren Fail. 2019;41(1):473–80.

Huang L. Tanjiu dui huanyou butong dengji IgAshenbing de huanzhe yuyi gexinghua huli ganyu duiyu xinli qingxu ji shenghuo zhiliang de yingxiang [Investigation of the effect of personalized nursing interventions on psychological, emotional and quality of life in patients with different grades of IgA nephropathy (IgAN)]. J Gen Pract Dentistry (Electronic Version). 2019;6(25):110–4.

Tian S, Yang X, Luo J, Guo H. Clinical and prognostic significance of C1q deposition in IgAN patients-a retrospective study. Int Immunopharmacol. 2020;88:106896.

Wu H, Xia Z, Gao C, Zhang P, Yang X, Wang R, et al. The correlation analysis between the Oxford classification of Chinese IgA nephropathy children and renal outcome– a retrospective cohort study. BMC Nephrol. 2020;21(1):247.

Liu Y, Wei W, Yu C, Xing L, Wang M, Liu R, et al. Epidemiology and risk factors for progression in Chinese patients with IgA nephropathy. Med Clin (Barc). 2021;157(6):267–73.

Wen D, Tang Y, Tan L, Tan J, Chen D, Zhang Y, et al. Sex disparities in IgA nephropathy: a retrospective study in Chinese patients. Int Urol Nephrol. 2021;53(2):315–23.

Nie P, Lou Y, Wang Y, Bai X, Zhang L, Jiang S, et al. Clinical and pathological analysis of renal biopsies of elderly patients in Northeast China: a single-center study. Ren Fail. 2021;43(1):851–9.

Feng S, Wang L, Liu X, Luo W, Xie M, Yang Q. 1002 li manxing shenzangbing huaner linchuang Ji Bingli fenxi[Clinical and pathological analysis of 1002 children with chronic kidney disease]. J Clin Pediatr. 2021;39(02):87–90.

Zhu L, Huang X, Zhang J, Li W, Chen E, Guo N. 102 Li Yizhishen IgA shenbing de huli tihui [Nursing experience of 102 cases of IgA nephropathy in transplanted kidneys]. Gen Pract Nurs. 2021;19(04):513–5.

Xu Z, Xiong Z. 3554 li shenzang bingli yu linchuang xiangguanxing fenxi [Analysis of renal pathology and clinical correlation in 3554 cases] [Shuoshi, https://doi.org/10.26921/d.cnki.ganyu.2021.001127] : M.S., Anhui Medical University; 2021.

Zhang P, Chen Z, Liu M. Huizhoushi dayawan diqu xuelingqian ertong niaoye shaicha fenxi [Analysis of urine screening in preschool children in Dayawan, Huizhou]. World’s Newest Med Inform Digest. 2021;21(84).

Yang D, Xie Y, He Z, Li Y, Li C. Qinhuangdaoshi 1459 Li xueling ertong shenzang jibing linchuang Yu Bingli fenxi [Clinical and pathological analysis of 1459 cases of renal disease in school-age children in Qinhuangdao]. Chin Healing Med. 2021;30(06):640–3.

Shang R, Zhu Y, Lin Z, Ma D, Ma Y, Ji M, et al. Yu Qiong liangdi yuanfaxing shenxiaoqiubing bingli leixing de bianqian duibi ji linchuang fenxi[Comparison and clinical analysis of pathological types of primary glomerular diseases in North Henan and Hainan]. J Clin Nephrol. 2021;21(2):111–8.

Lu X. Zhendui butong fenji IgA shenbing huanzhe kaizhan gexinghua huli moshi de linchuang xiaoguo guancha [Clinical effects of personalized care model for patients with different grades of IgA nephropathy]. Essent Health Readings. 2021;8:125.

Qi S. Zhendui butong fenji IgA shenbing kaizhan gexinghua huli moshi de linchuang xiaoguo guancha [Clinical effects of personalized care model for patients with different grades of IgA nephropathy]. Diet Health Care. 2021;8.

Pan Q, Ye Z, Zeng C, Ning W. Feishenbingxing tefaxing moxing shenbing Yu feishenbingxing IgA shenbing de linchuang tedian bijiao [Clinical comparative analysis of non-nephrotic idiopathic membranous nephropathy and non-nephrotic IgA nephropathy]. Anhui Med. 2021;25(2):268–70.

Xiao L, Wang J, Zhang M, He X, Gao J, Xi C. Yufangxing kangning zai budui guanbing shenbing zonghezheng zhiliao zhong de yingyong xiaoguo yanjiu [Study on the effect of preventive anticoagulation in the treatment of nephrotic syndrome in army officers and soldiers]. Northwest J De?F Med. 2021;42(01):30–6.

Zhao JL, Wang JJ, Huang GP, Feng CY. Primary IgA nephropathy with nephrotic-range proteinuria in Chinese children. Med (Baltim). 2021;100(21):e26050.

Article   CAS   Google Scholar  

Le W, Liang S, Deng K, Hu Y, Zeng C, Liu D. 1126 li zhongguo hanzu chengren IgA shenbing huanzhe de changqi yuhou ji weixian yinsu fenxi [Long-term prognosis and risk factor analysis of 1126 Chinese Han adult patients with IgA nephropathy]. J Nephrol Dialysis Ren Transplantation. 2011;20(02):101–8.

Cen J, Hu H, Cheng Y, Liu Y, Wu S, Qin W, et al. Guangxi duominzu juju diqu dan zhongxin shenhuojian bingli ziliao ji minzu tedian fenxi [Pathological data of single-center kidney biopsy and analysis of ethnic characteristics in a multi-ethnic area of Guangxi]. J Chengdu Med Coll. 2021;16(04):482–5.

Yang J, Zhang L, Wang Y. Manxing Shenzangbing Shen Chuanci huojian bingli tezheng fenxi [Analysis of pathological features of renal puncture biopsy in chronic kidney disease]. Tibetan Med. 2021;42(05):49–51.

Duan Y, Lie C, Zhang L, AYiJiaKen K, Guo W, Li Y, et al. Xinjiang Weiwuer Zizhiqu 10 684 Li Shen huojian bingli ziliao Yu Liuxingbingxue tedian fenxi [Analysis of pathological data and epidemiological characteristics of 10 684 kidney biopsies in Xinjiang Uygur Autonomous Region]. Chin J Nephrol. 2021;37(06):490–8.

Gu C, Li Q, Liang W, Bi H, Xie M, Wu D. Guilin he jining liangsuo yiyuan 1370 Li Shen huojian jibing fenbu tezheng [Characteristics of disease distribution in 1370 kidney biopsies from two hospitals in Guilin and Jining]. J Cent South Univ (Medical Edition). 2021;46(09):974–82.

Li J, Cui Z, Long J, Huang W, Wang J, Zhang H, et al. Primary glomerular nephropathy among hospitalized patients in a national database in China. Nephrology, Dialysis, transplantation: Official Publication of the European Dialysis and Transplant Association -. Eur Ren Association. 2018;33(12):2173–81.

Chen S, Tang Z, Xiang H, Li X, Chen H, Zhang H, et al. Etiology and outcome of crescentic glomerulonephritis from a single center in China: a 10-year review. Am J Kidney Dis. 2016;67(3):376–83.

Yata N, Nakanishi K, Shima Y, Togawa H, Obana M, Sako M, et al. Improved renal survival in Japanese children with IgA nephropathy. Pediatr Nephrol. 2008;23(6):905–12.

Goto M, Wakai K, Kawamura T, Ando M, Endoh M, Tomino Y. A scoring system to predict renal outcome in IgA nephropathy: a nationwide 10-year prospective cohort study. Nephrology, Dialysis, transplantation: Official Publication of the European Dialysis and Transplant Association -. Eur Ren Association. 2009;24(10):3068–74.

Yamamoto R, Nagasawa Y, Shoji T, Iwatani H, Hamano T, Kawada N, et al. Cigarette smoking and progression of IgA nephropathy. Am J Kidney Dis. 2010;56(2):313–24.

Yokoyama H, Sugiyama H, Sato H, Taguchi T, Nagata M, Matsuo S, et al. Renal disease in the elderly and the very elderly Japanese: analysis of the Japan Renal Biopsy Registry (J-RBR). Clin Exp Nephrol. 2012;16(6):903–20.

Komatsu H, Kikuchi M, Nakagawa H, Fukuda A, Iwakiri T, Toida T, et al. Long-term survival of patients with IgA nephropathy after dialysis therapy. Kidney Blood Press Res. 2013;37(6):649–56.

Matsuzaki K, Suzuki Y, Nakata J, Sakamoto N, Horikoshi S, Kawamura T, et al. Nationwide survey on current treatments for IgA nephropathy in Japan. Clin Exp Nephrol. 2013;17(6):827–33.

Sugiyama H, Yokoyama H, Sato H, Saito T, Kohda Y, Nishi S, et al. Japan Renal Biopsy Registry and Japan kidney Disease Registry: Committee Report for 2009 and 2010. Clin Exp Nephrol. 2013;17(2):155–73.

Moriyama T, Tanaka K, Iwasaki C, Oshima Y, Ochi A, Kataoka H, et al. Prognosis in IgA nephropathy: 30-year analysis of 1,012 patients at a single center in Japan. PLoS ONE. 2014;9(3):e91756.

Sato R, Joh K, Komatsuda A, Ohtani H, Okuyama S, Togashi M, et al. Validation of the Japanese histologic classification 2013 of immunoglobulin A nephropathy for prediction of long-term prognosis in a Japanese single-center cohort. Clin Exp Nephrol. 2015;19(3):411–8.

Oshima Y, Moriyama T, Itabashi M, Takei T, Nitta K. Characteristics of IgA nephropathy in advanced-age patients. Int Urol Nephrol. 2015;47(1):137–45.

Hattori M, Iwano M, Sako M, Honda M, Okada H, Akioka Y, et al. Transition of adolescent and young adult patients with childhood-onset chronic kidney disease from pediatric to adult renal services: a nationwide survey in Japan. Clin Exp Nephrol. 2016;20(6):918–25.

Kaihan AB, Yasuda Y, Katsuno T, Kato S, Imaizumi T, Ozeki T, et al. The Japanese histologic classification and T-score in the Oxford classification system could predict renal outcome in Japanese IgA nephropathy patients. Clin Exp Nephrol. 2017;21(6):986–94.

Kajiwara N, Hayashi K, Fujiwara M, Nakayama H, Ozaki Y. Identification of children with chronic kidney disease through school urinary screening using urinary protein/creatinine ratio measurement: an observational study. Clin Exp Nephrol. 2020;24(5):450–7.

Miyabe Y, Karasawa K, Akiyama K, Ogura S, Takabe T, Sugiura N, et al. Grading system utilising the total score of Oxford classification for predicting renal prognosis in IgA nephropathy. Sci Rep. 2021;11(1):3584.

Utsunomiya Y, Koda T, Kado T, Okada S, Hayashi A, Kanzaki S, et al. Incidence of pediatric IgA nephropathy. Pediatr Nephrol. 2003;18(6):511–5.

Lee S, Choi S, Se-bin S, Kyunghwan J, Taewon L. Relative risk factors of prognosis in IgA nephropathy patients with depressed renal functions. Korean J Nephrol. 2010;29(2):198–207.

Lee H, Kim DK, Oh KH, Joo KW, Kim YS, Chae DW, et al. Mortality of IgA nephropathy patients: a single center experience over 30 years. PLoS ONE. 2012;7(12):e51225.

Lee Ha-Jung. Long-term patient and renal survivals and their predictable factor analyses in IgA nephropathy patients [Thesis]: College of Medicine, Seoul National University; 2012.

Cho BS, Hahn WH, Cheong HI, Lim I, Ko CW, Kim SY, et al. A nationwide study of mass urine screening tests on Korean school children and implications for chronic kidney disease management. Clin Exp Nephrol. 2013;17(2):205–10.

Lee H, Kim DK, Oh KH, Joo KW, Kim YS, Chae DW, et al. Mortality and renal outcome of primary glomerulonephritis in Korea: observation in 1,943 biopsied cases. Am J Nephrol. 2013;37(1):74–83.

Bae HJ, Moon KR, Kim YJ, Choi DE, Na KR, Lee KW, et al. Clinical and histopathological analysis of the kidney biopsies of 2,450 patients seen over 30 years at Chungnam National University Hospital. Korean J Med. 2015;84(3):379–88.

Jeong EG, Hyoun S, Lee SM, An WS, Kim SE, Son YK. Clinical outcomes of nephrotic syndrome in immunoglobulin a nephropathy. Saudi J Kidney Dis Transplantation. 2017;28(6):1314–20.

Kee YK, Yoon CY, Kim SJ, Moon SJ, Kim CH, Park JT, et al. Determination of the optimal target level of proteinuria in the management of patients with glomerular diseases by using different definitions of proteinuria. Med (Baltim). 2017;96(44):e8154.

Shin HS, Cho DH, Kang SK, Kim HJ, Kim SY, Yang JW, et al. Patterns of renal disease in South Korea: a 20-year review of a single-center renal biopsy database. Ren Fail. 2017;39(1):540–6.

Suh JS, Jang KM, Hyun H, Cho MH, Lee JH, Park YS, et al. Remission of proteinuria may protect against progression to chronic kidney disease in pediatric-onset IgA nephropathy. J Clin Med. 2020;9(7):2058.

Chiu HF, Chen HC, Lu KC, Shu KH. Taiwan Society of Nephrology. Distribution of glomerular diseases in Taiwan: preliminary report of National Renal Biopsy Registry-publication on behalf of Taiwan Society of Nephrology. BMC Nephrol. 2018;19(1):6.

Yu MC, Lee F, Huang WH, Hsueh S. Percutaneous ultrasound-guided renal biopsy in children: the need for renal biopsy in pediatric patients with persistent asymptomatic microscopic hematuria. Biomedical J. 2014;37(6):391–7.

National Health Research Institute & Taiwan Society of Nephrology. 2019 Annual Report on Kidney Disease in Taiwan.

Jegatheesan D, Nath K, Reyaldeen R, Sivasuthan G, John GT, Francis L, et al. Epidemiology of biopsy-proven glomerulonephritis in Queensland adults. Nephrol (Carlton). 2016;21(1):28–34.

Briganti EM, Dowling J, Finlay M, Hill PA, Jones CL, Kincaid-Smith PS, et al. The incidence of biopsy-proven glomerulonephritis in Australia. Nephrology, Dialysis, transplantation: Official Publication of the European Dialysis and Transplant Association. - Eur Ren Association. 2001;16(7):1364–7.

Lee AYS, Lin M-W. Do IgA nephropathy presentations display any seasonality? J Nephropathology. 2021;10(3):e33–e.

Subspecialty Group of Renal Diseases of the Society of Pediatrics Chinese Medical Association. [Evidence-based guidelines for diagnosis and treatment of primary IgA nephropathy (2016)]. Zhonghua Er Ke Za Zhi. 2017;55(9):643–6.

[Health, Labor and Welfare Scientific Research Grant Policy Research Project for Intractable Diseases. (Intractable Disease Policy Research Project)].[IgA Nephropathy 2020 Clinical Practice Guidelines].[Tokyo Igakusha]. 2021.

LoMartire R, Ang BO, Gerdle B, Vixner L. Psychometric properties of short Form-36 Health Survey, EuroQol 5-dimensions, and hospital anxiety and Depression Scale in patients with chronic pain. Pain. 2020;161(1):83–95.

OECD. Conversion rates - Exchange rates - OECD Data [Available from: http://data.oecd.org/conversion/exchange-rates.htm .

Kwon CS, Daniele P, Forsythe A, Ngai C. A systematic literature review of the epidemiology, health-related quality of life impact, and economic burden of immunoglobulin A nephropathy. J Health Econ Outcomes Res. 2021;8(2):36–45.

Orta-Sibu N, Lopez M, Moriyon JC, Chavez JB. Renal diseases in children in Venezuela, South America. Pediatr Nephrol. 2002;17(7):566–9.

Coppo R, Gianoglio B, Porcellini MG, Maringhini S. Frequency of renal diseases and clinical indications for renal biopsy in children (report of the Italian National Registry of Renal biopsies in Children). Group of Renal Immunopathology of the Italian Society of Pediatric Nephrology and Group of Renal Immunopathology of the Italian Society of Nephrology. Nephrology, Dialysis, transplantation: Official Publication of the European Dialysis and Transplant Association -. Eur Ren Association. 1998;13(2):293–7.

Barbour S, Lo C, Espino-Hernandez G, Sajjadi S, Feehally J, Klarenbach S, et al. The population-level costs of immunosuppression medications for the treatment of glomerulonephritis are increasing over time due to changing patterns of practice. Nephrology, Dialysis, transplantation: Official Publication of the European Dialysis and Transplant Association -. Eur Ren Association. 2018;33(4):626–34.

Shen P, He L, Li Y, Wang Y, Chan M. Natural history and prognostic factors of IgA nephropathy presented with isolated microscopic hematuria in Chinese patients. Nephron Clin Pract. 2007;106(4):c157–61.

Download references

Acknowledgements

This work was presented as an abstract at the ISN World Congress of Nephrology 2022 meeting.

This work was supported by Otsuka Pharmaceutical Development & Commercialization, Inc., Princeton, NJ.

Author information

Authors and affiliations.

OPEN Health, Boston, MA, USA

OPEN Health, Shanghai, China

Fen Du & Zhaoli Tang

Otsuka Pharmaceutical Development & Commercialization, Inc., NJ, Princeton, USA

Sandipan Bhattacharjee & Kristin Pareja

You can also search for this author in PubMed   Google Scholar

Contributions

Research conception and/or design: Kristin Pareja, Sandipan Bhattacharjee, Omer Zaidi, Fen Du, and Zhaoli Tang; Literature searching strategy: Omer Zaidi, Fen Du, and Zhaoli Tang; literature screening and data extraction and analysis: Fen Du and Zhaoli Tang; All authors were involved in the drafting and /or substantial revision of manuscript; All authors accept accountability for their contributions and agree as a condition of authorship to ensure resolution of questions about the work. All authors approved the submitted version.

Corresponding author

Correspondence to Kristin Pareja .

Ethics declarations

Competing interests.

Kristin Pareja and Sandipan Bhattacharjee are employees of Otsuka Pharmaceutical Development & Commercialization, Inc., Princeton, NJ, United States. Omer Zaidi, Fen Du, and Zhaoli Tang are employees of OPEN Health and were paid consultants by Otsuka.

Ethics approval and consent to participate

Not applicable.

Consent for publication

Additional information, publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1

Rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Zaidi, O., Du, F., Tang, Z. et al. Review on epidemiology, disease burden, and treatment patterns of IgA nephropathy in select APAC countries. BMC Nephrol 25 , 136 (2024). https://doi.org/10.1186/s12882-024-03555-5

Download citation

Received : 21 April 2023

Accepted : 21 March 2024

Published : 16 April 2024

DOI : https://doi.org/10.1186/s12882-024-03555-5

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

  • IgA nephropathy
  • Epidemiology
  • Disease burden

BMC Nephrology

ISSN: 1471-2369

literature review on primary healthcare

  • Open access
  • Published: 08 July 2023

Understanding geriatric models of care for older adults living with HIV: a scoping review and qualitative analysis

  • Kristina Marie Kokorelias 1 , 2 , 3 ,
  • Anna Grosse 1 , 4 ,
  • Alice Zhabokritsky 5 , 6 , 7 &
  • Luxey Sirisegaram 1 , 4  

BMC Geriatrics volume  23 , Article number:  417 ( 2023 ) Cite this article

1419 Accesses

1 Citations

7 Altmetric

Metrics details

Advances in Human Immunodeficiency Virus (HIV) treatment have reduced mortality rates and consequently increased the number of individuals with HIV living into older age. Despite this, people aged 50 years and older have been left behind in recent HIV treatment and prevention campaigns, and a gold-standard model of care for this population has not yet been defined. Developing evidence-based geriatric HIV models of care can support an accessible, equitable, and sustainable HIV health care system that ensures older adults have access to care that meets their needs now and in the future.

Guided by Arksey & O’Malley (2005)’s methodological framework, a scoping review was conducted to determine the key components of, identify gaps in the literature about, and provide recommendations for future research into geriatric models of care for individuals with HIV. Five databases and the grey literature were systematically searched. The titles, abstracts and full texts of the search results were screened independently in duplicate. Data were analyzed using a qualitative case study and key component analysis approach to identify necessary model components.

5702 studies underwent title and abstract screening, with 154 entering full-text review. 13 peer-reviewed and 0 grey literature sources were included. Most articles were from North America. We identified three primary model of care components that may improve the successful delivery of geriatric care to people living with HIV: Collaboration and Integration; Organization of Geriatric Care; and Support for Holistic Care. Most articles included some aspects of all three components.

To provide effective geriatric care to older persons living with HIV, health services and systems are encouraged to use an evidence-based framework and should consider incorporating the distinct model of care characteristics that we have identified in the literature. However, there is limited data about models in developing countries and long-term care settings, and limited knowledge of the role of family, friends and peers in supporting the geriatric care of individuals living with HIV. Future evaluative research is encouraged to determine the impact of optimal components of geriatric models of care on patient outcomes.

Peer Review reports

Human immunodeficiency virus (HIV) continues to be characterized as one of the most prominent public health threats [ 1 ], although advances in antiretroviral therapy (ART) have reduced mortality rates and transformed HIV into a manageable, chronic disease [ 2 ]. The life expectancy for people living with HIV who have had early and sustained access to ART is now similar to that of HIV-negative populations [ 3 , 4 , 5 ]. Thus, there is now an increase in the number of individuals living with HIV into older age [ 6 ] and the number of older adults (aged ≥ 50 years [ 7 ]) living with HIV is expected to increase even further in the coming years [ 8 ]. The proportion of older adults living with HIV has nearly tripled since 2000 [ 9 ].

Older adults with HIV have an increased risk of dementia, diabetes, frailty, depression, osteoporosis, and some cancers, compared to those who are HIV negative [ 10 , 11 , 12 ]. Comorbidities commonly associated with ageing (e.g., diabetes) have been found to increase the risk of opportunistic infections (e.g., HIV-related concerns) in older adults with HIV [ 13 , 14 , 15 , 16 ]. Moreover, stigma is associated with higher rates of loneliness, social isolation and depression in the HIV population [ 17 ]. Despite their increased risk of poor health and social outcomes, older adults living with HIV face many challenges accessing appropriate health and social care, further exacerbating their poor health outcomes [ 18 ]. The stigma associated with HIV may result in a fear of disclosure that delays treatment [ 19 ], and individuals with HIV can feel discriminated against by healthcare providers, resulting in hesitation about or refusal to seek medical care [ 20 , 21 ]. Older adults also tend to not access social services designed for the HIV-infected population because of their own assumption that these programs are created only for younger individuals [ 22 ]. Consequently, HIV scholars have urged for a health and social care system where knowledge and communication about geriatric HIV care are encouraged amongst advocates who work directly with this population, such as geriatric healthcare workers [ 23 ].

Geriatric specialists have expertise in managing many comorbidities that share associations with both ageing and HIV, despite geriatricians being hesitant to take a prominent role in the care of HIV in older adults [ 24 ] due to a lack of experience and training [ 25 ]. While health policy reports a preference for general practice-based HIV care over specialist care [ 26 , 27 ], general practitioners may have a less nuanced understanding about the holistic care of an older adult with complex comorbidities, geriatric syndromes, and metabolic complications when compared with geriatricians [ 28 ]. The use of the Comprehensive Geriatric Assessment (CGA) has been explored, and may lead to improved health and social outcomes in the older adult-HIV population [ 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], and may be used to measure outcomes in clinical trials that aim to improve the delivery of HIV care for the older adult-HIV population [ 36 ]. However, in the absence of specialized geriatric models of HIV care, many older adults with HIV fail to receive a CGA [ 37 , 38 ] and the recommendations from CGAs are rarely implemented due to a lack of feasibility following a geriatric consult for older adults with HIV [ 39 ].

Numerous models of care, defined as “the way health services are delivered” [ 40 ] (pg., 3), have been developed for older adults with HIV. Many involve geriatric specialists in HIV care, with geriatricians taking on various responsibilities ranging from consultation to leadership roles [ 36 , 41 ]. However, the gold-standard model of care for older adults living with HIV have not yet been defined [ 34 , 35 ], and geriatric care is often delivered by non-geriatric specialists [ 16 ]. Instead of examining models of care, recent literature reviews have tended to focus on the prevalence and experiences of older adults in HIV care [7, NaN], or the experiences of geriatricians [ 24 ]. As implementing geriatric models of HIV care into healthcare settings requires unique considerations [ 28 ], an improved understanding of existing models of care may inform best-practices. This approach has been done to inform the design and delivery of other models of healthcare [ 42 , 43 , 44 , 45 ]. Therefore, we conducted a scoping review of the existing evidence about geriatric models of care for older adults within the context of HIV. To our knowledge, this is the first review to systematically identify the core operational components of existing models of care specific to older adults living with HIV.

A scoping review was selected to map the available literature on geriatric models of care for older adults within the context HIV [ 46 ]. The protocol for our scoping review followed the well-established framework outlined by Arksey and O’Malley [ 46 ] and later refined by Levac et al. [ 47 ] and Colquhoun et al. [ 48 ]. The framework was selected as it provides guidance to ensure a rigorous scoping review approach utilizing a comprehensive search strategy [ 46 ]. Our protocol has been published elsewhere (blinded for review #1) but is briefly described within this section of the manuscript. There were no deviations from our protocol. The framework includes five steps: 1) identifying the research questions; 2) identifying relevant literature; 3) study selection; 4) charting the data; 5) collating, summarizing and reporting the results [ 46 ]. The optional sixth step of consulting with key stakeholders was not followed due to financial resource constraints. We briefly summarize each step and report our findings in accordance with The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) Extension for Scoping Reviews (PRISMA-Scr) [ 49 ] (see Supplemental Material A).

Step 1: Identifying the research questions

Our questions were developed to support a knowledge synthesis that could mobilize the current evidence into practice. Our study aimed to answer: What are the key components of the existing models of HIV care for older adults (aged ≥ 50 years [ 7 , 29 ])?

Step 2: Searching for relevant studies

To identify studies, we developed a comprehensive search strategy with an experienced medical information specialist (CDC) who first conducted the search in MEDLINE(R) ALL (in Ovid, including Epub Ahead of Print, In-Process & Other Non-Indexed Citations, Ovid MEDLINE(R) Daily) and then translated it into NLM’s PubMed OVID Embase + Embase Classic, EBSCO’s CINAHL Complete, Clarivate’s Web of Science Core Collection, and Elsevier’s Scopus from the earliest record to 2022 (see Supplemental Material B for the full strategies ) . The search strategy was peer-reviewed according to the peer-review of electronic search strategy guidelines (the PRESS strategy) [ 50 ]. MeSH terms were used. All searches were limited to English language. The final searches were completed on Friday, October 21, 2022. Duplicates were removed using the Bramer method in EndNote [ 51 ]. Covidence was used to manage the review process, including the deduplication of database results [ 52 ].

Gray literature and non-indexed articles were searched for using Google Scholar, Open Grey, open Google searches and relevant websites, including the World Health Organization, UK National Research Register, CADTH’s “Grey Matters”, New York Academy of Medicine's Grey Literature Report, the Canadian Medical Association InfoBase and the National Institute for Heath and Care Excellence – Guidance. Similar search terms used in the scientific search were used. We also consulted with stakeholders of our research (i.e. geriatricians, infectious disease specialists) for any gray literature missed.

Step 3: Selecting studies

Three reviewers (LS, KMK and AG) independently screened article titles and abstracts (level 1-screening) and then full articles (level 2-screening) were screened in duplicate to identify potentially relevant studies. In both levels of screening, any disagreements were resolved through team-based discussion. Articles were included if they described an implemented model or models of care to treat older adults living with HIV exclusively (i.e., not as part of the treatment for multi-morbidity including HIV) and included a registered healthcare provider that specialized in geriatric care (e.g., gerontology social worker, geriatric clinical nurse specialist, geriatrician). Perspective (viewpoint) papers that describe implemented models of HIV care were also included. Book sections, theses, film broadcasts, abstracts without adequate data, and literature reviews were excluded. Articles were also excluded if they: (1) did not propose an original model of HIV care specifically for older adults (i.e., models of care for all adults or models that may include older adults), (2) focused on ethical issues or the theoretical understandings of HIV care or geriatric care, (3) focused on training healthcare providers on how to deliver HIV and/or geriatric care; and (4) described social support, rather than care in a clinical, health-care context. Forward and backward searching were conducted on the final full-text articles to ensure a broad search using EndNote and Citationchaser [ 53 , 54 ].

Step 4: Charting the data

The same three reviewers independently extracted data from the included studies using a data abstraction form that was developed and pilot tested by two researchers (LS and KMK). The data form was tested on five articles for consistency in understanding and ensuring that all relevant data was captured. No changes were made after comparing the pilot test results. The fields for abstraction included author last name, year, study type, setting, geographic location (country), methodology, characteristics of intervention (model of care) and delivery method, participant and provider characteristics, patient inclusion and exclusion criteria, desired outcomes (primary and secondary), results and key conclusions.

Step 5: Collating, summarizing and reporting the results

Data were analyzed using a systematic qualitative case study analytic approach [ 55 ]. First, each author reviewed the abstracted data and independently noted the core operational components (i.e., model structure and process for delivery) described in the models of care. Then the authors came together to list all the identified model components across the included articles, by exploring the similar and different terms to describe the same model components. Each model component was given a label and a definition. These components became the basis of codes that were then appropriately applied by one author (KMK) to each article using NVivo 12 software [ 56 ]. Next the coded data was reviewed by all authors to determine how each model of care described in the articles adhered or did not adhere to each of the particular model components (codes). The authors met weekly to discuss the process of adherence. This discussion process was informed by adherence analyses [ 57 ]. During this process, authors were encouraged to identify any components that were potentially originally overlooked. No additional suggestions were made on key model components. The model components adhered to across the articles and models of care formed the basis of the results.

After a comprehensive list of the identified model components had been determined, two authors (KMK and AG) went through each article and identified them as either adhering or not adhering to each particular characteristic component, as determined by written evidence within the articles. This was done by having the two authors each providing their vote (i.e., adhering or not) and then comparing the two scoring. Any uncertainty in adherence assignment or discrepancies in voting was resolved through discussion amongst all the investigators as done in other reviews with similar methodologies [ 42 ].

Step 6: Consultation

To further contribute to our component adherence, we shared our model components with the senior investigators of our peer-reviewed articles for feedback. We also asked the investigators to assess their level of agreement with our interpretations of their study's component adherence. Lastly, we asked authors to send along any studies that they believed would be relevant to our review. This was done via email by the first (KMK) and senior author (LS) in December 2022. After two months, we only received five replies from 13 potential authors (n = 5/13, 38%) and all five authors agreed with the adherence we provided their article with, suggesting an accurate adherence analysis. No investigators provided us with additional materials or feedback on the model components, rather just commenting on their article specifically.

The databases search yielded a total of 5699 unique citations, from which 151 articles were selected for full text review. Of these 151 articles, 12 peer-reviewed articles were included. An additional peer-reviewed article was obtained from hand searching. No grey literature was included. Thirteen articles were included in the final analysis (see Fig.  1 PRISMA flow chart).

figure 1

PRISMA flow chat diagram

Most ( n  = 10/13, 77%) of the publication activity occurred in the United States (USA) [ 28 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 ]. The remaining three articles ( n  = 3/13,23%) were from the United Kingdom (UK)[ 66 , 67 , 68 ]. Over half ( n  = 9/13,69%) of the articles were published in the last 5 years (2018–2023) [ 28 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 ]. In published papers, the most common research methods were qualitative. The key description from these studies were abstracted and are summarized in Table 1 .

Patient population

Patients in the included models of care ranged from 48 [ 60 ]–87 years of age [ 67 ]. The number of patients served ranged from 76 [ 39 ] over 4 years to a maximum of 4000 at the time of data collection (period unspecified) [ 66 ]. Of those articles that reported sex ( n  = 9/13,69%), the majority described primarily male samples [ 39 , 60 , 61 , 62 , 63 , 64 , 65 , 68 ]. Articles that reported race/ethnicity ( n  = 7/13, 54%), described including participants who were mostly White [ 60 , 61 , 67 ] or African American [ 39 , 62 , 63 , 65 , 68 ]. These articles all included White individuals. Of the two ( n  = 2/13, 15%) studies that reported the median time since HIV diagnosis [ 39 ], the average was 12.5 [ 63 ]- 21.5 [ 39 ] years. Medicaid was used as the patients’ primary health insurance in the USA [ 39 , 61 , 62 ].

Key operational components of geriatric models of HIV care

The qualitative analysis identified three distinct model of care components, each with one or more sub-components. These components are listed and described in Table 2 . Table 3 also lists the articles adherent to each component. These model components entail: Collaboration and Integration; Organization of Geriatric Care; and Support for Holistic Care. These three components are described and are illustrated in Fig.  2 .

figure 2

 Main Model Components

Model Component 1: Collaboration and integration

Eleven ( n  = 11/13, 85%) [ 28 , 39 , 41 , 59 , 60 , 61 , 64 , 65 , 66 , 67 , 68 ] articles described the importance of collaboration and integration for providers caring for older adults with HIV. Models of care frequently incorporated a team of multidisciplinary professionals from the health and social care sectors that were linked in with community supports to improve healthcare delivery for older adults with HIV.

i) Multidisciplinary care roles

Multidisciplinary teams supported the care of older adults living with HIV in all eleven articles that adhered to the Collaboration and Integration model component ( n  = 11/13, 85%). These articles described several provider roles, including designated HIV specialists (infectious diseases or internal medicine physicians) [ 39 , 41 , 60 , 61 , 65 , 66 , 67 , 68 ], geriatricians [ 39 , 41 , 60 , 61 , 64 , 65 , 67 , 68 ] and/or dual-trained HIV and geriatric physicians. Other physician roles included psychiatrists [ 39 ], endocrinologists [ 65 ], cardiologists [ 41 , 60 , 61 , 68 ] and medicine fellows [ 64 ]. Numerous nursing roles [ 41 , 59 , 60 , 61 , 64 , 65 ] were involved, such as HIV clinical nurse specialists [ 41 , 66 , 67 ] and nurse practioners [ 41 , 64 , 65 ]. Allied health professionals included dieticians [ 39 , 65 , 66 ]/ nutritionists[ 41 ], social workers[ 39 , 41 , 59 , 61 , 65 , 66 , 68 ], phsysiotherapists [ 41 , 59 , 66 ], occupational therapists [ 41 , 59 , 66 ], speech-language pathologists[ 59 ], counselors/therapists [ 59 ], homecare aides [ 59 ], clinical psychologists [ 65 , 66 ] and specialist pharmacists [ 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 ].

In addition to healthcare providers, several models of care also included research team members (i.e. research coordinators [ 39 ], research assistants [ 39 ], graduate students in gerontology and epidemiology [ 41 ]), medical directors and administrative staff [ 59 , 61 ] (e.g., program coordinator[ 60 ], a gerontologist [i.e., non-clinician] [ 41 ]), chaplains [ 59 ] and volunteers [ 59 ]. Peer navigator roles were also described [ 28 , 41 , 65 , 68 ].

The key responsibilities of these providers differed between models of care and many had overlapping functions. Physicians [ 39 , 41 , 60 , 61 , 64 , 65 , 66 , 67 , 68 ] and nurses [ 41 , 59 , 60 , 61 , 64 , 65 ] were often responsible for overseeing and ensuring appropriate medical care, such as disease and symptom management. Other healthcare professional roles and designated navigation-specific roles [ 28 , 65 , 68 ], provided medication, rehabilitation [ 41 , 59 , 66 ], dietary [ 39 , 59 , 65 , 66 ], or emotional counseling to patients and caregivers [ 59 ]. Geriatricians, in particular, provided evidence-based, best-practice advice that was shared with patients’ primary care providers [ 39 , 41 , 60 , 61 , 64 , 65 , 67 , 68 ]. HIV specialists generally oversaw HIV-related treatments and community services [ 39 , 41 , 60 , 61 , 65 , 66 , 67 , 68 ]. Pharmacists often provided medication instructions and explained care protocols [ 41 , 60 , 65 , 66 , 67 ]. All care providers were described as providing informational and tangible (i.e., hands-on care) support. Administrative and research staff were responsible for documenting relevant information accurately [ 39 , 41 , 59 , 61 ]. Only one article mentioned the role of non-professional caregivers (i.e., spouse, partner, or friend) as part of the care team [ 59 ], in which they were described as providing much of the personal care involved in the home management of HIV [ 59 ].

Administrative team members and researchers support the collection of client information to systematically standardize clinical and research operations [ 39 , 41 , 59 , 60 , 61 ].

ii) Team-Based care

Ten articles ( n  = 10/13, 77%) described the team-based delivery of multidisciplinary care, which was facilitated by several different mechanisms. Informational continuity was identified as being vital in ensuring a consistent and coherent approach to the management of older adults’ evolving needs [ 67 ]. A shared electronic health record was found to enable team-based care, including the ability for multiple providers to chat in real-time [ 28 , 41 , 60 , 61 , 68 ]. Moreover, the multidisciplinary team would often meet to discuss each patient’s background, their outcome measures, current clinical problems, and anticipated needs [ 28 ]. Consequently, the team would facilitate the appropriate screenings through access to different providers, services, and resources [ 28 , 39 , 41 , 60 , 61 , 65 , 68 ]. Following a referral and initial clinical visit, the HIV-geriatric specialists would maintain communication with the primary care team [ 28 ], make recommendations based on the identified age-related needs for care [ 28 ], initiate referrals to other specialist care providers and communicate with community stakeholders to meet other needs [ 59 ]. Team-based care allowed for all members of the circle of care to have a comprehensive knowledge of patients’ health and social care needs (e.g., functional, cognitive) [ 28 ]. Results from retrospective medical and pharmacy chart reviews helped inform all team decisions [ 65 ]. When deemed necessary, the team would be able to create a new action plan [ 39 ] and determine follow-up [ 64 ]. Nurses who worked in case manager roles helped to facilitate this care by coordinating a comprehensive, holistic care plan in collaboration with the patient, caregiver(s), physician(s), and other members of the care team [ 59 ]. Team-based models of care were felt to improve the coordination of care [ 41 ].

iii) Community linkages

Nine articles ( n  = 9/13, 69%) described how the management of HIV in older adults involved active, collaborative partnerships between multidisciplinary healthcare providers and the various community resources available to individuals living with HIV. Models of care were often delivered in linkage with community resources (e.g., social groups) [ 41 ] and through community partners (e.g., volunteer organizations) [ 41 ]. Social workers often helped to facilitate community linkages [ 59 ], and grant-funding helped to pay for community services [ 65 ]. By working with community partners [ 41 ], models of care were able to deliver both nonclinical care [ 39 ] (e.g., peer support to decrease isolation and depression [ 41 ]), as well as clinical care [ 28 ] (e.g., care facilitated by a community nurse [ 39 ]). Community outreach also helped to foster friendships amongst older adults living with HIV through social and community-building activities including dinners, speeches, dances, and trips [ 59 ]. Local partner agencies assisted with meeting the housing needs for patients with marginal housing [ 61 ], and with the provision of legal services [ 61 ]. Partnering medical HIV-geriatric services with community services was thought to result in improved access to services [ 28 ], reduced social isolation [ 60 ], improved home safety management [ 59 ] and the provision of spiritual care such as priests, rabbis, or pastoral personnel [ 59 ].

Model Component 2: Organization of geriatric care

The specific organizational structure of each model of care varied, particularly as it related to staffing models, processes for access and referrals, and the implementation of evidence-based, best-practice care and follow-up. All articles adhered and contributed to this model component. Models of care were often delivered through clinics that were predominantly hospital-based (i.e., operating within a hospital) [ 39 , 60 , 61 , 65 , 66 , 67 ]. Additionally, geriatric clinics were outpatient clinics housed within existing HIV clinics [ 41 ] or community-based services providing home care [ 59 ]. Some models of care were able to be delivered virtually, either solely via phone [ 62 ] or in addition to in-person delivery [ 65 , 66 ]. Some clinics ran weekly [ 66 ], bi-weekly [ 65 ] or monthly [ 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 ], whereas others were full-time [ 39 , 65 ].

i) Staffing models

Within the identified models of care, various staffing models were described. All articles contributed to this sub-component. The Geriatrician-Referral model included a geriatrician who consulted on patients [ 39 , 41 , 60 , 61 , 64 , 65 ] based on a referral from the primary care team (often an HIV provider [ 41 ]), according to the perceived need (e.g., cognitive concerns). Six articles ( n  = 6/13, 46%) adhered to this. The Joint-Clinic model involved a geriatrician and HIV physician who were present in a single, combined clinic [ 41 , 66 , 67 , 68 ]. Four articles ( n  = 4/13, 31%) adhered to this model. The HIV-Physician-led model involved staffing clinics with a HIV physician and clinical nurse specialist trained in geriatrics, without geriatrician involvement [ 65 , 66 ]. Two articles ( n  = 2/13, 15%) adhered to this model. A further staffing model, the Dual-Trained Provider model, involved a dually-trained HIV and geriatrics provider, as either a physician [ 41 , 68 ] or psychotherapist [ 62 , 63 ]. Four articles ( n  = 4/13, 31%) adhered to this model. The Nurse-led model, involved nurse-lead teams of allied health professionals [ 59 ]. Only one article ( n  = 1/13, 8%) adhered to this model [ 59 ].

i) Access and referrals

All articles described processes to ensure appropriate access to care, and thus contributed to this sub-component. Referrals and on-call services [ 59 ] were used to facilitate access to care [ 59 ]. In some models of care, older adults were only able to access geriatric services via a referral from their HIV primary care team [ 39 , 41 , 60 , 61 , 67 ], while in other models, referrals were triggered by a combination of age (i.e., 50 years of age or older) and need (e.g., complexity) [ 28 , 66 , 67 , 68 ]. The process of receiving geriatric care often began with an assessment of patients’ needs and functional status (e.g., cognition) [ 39 ] and the collection of demographic information (e.g., age, sex, race/ethnicity, HIV risk factors, marital status, insurance status [ 39 ])[ 28 , 61 , 65 ]. Provider referrals were often documented through tracking scheduled appointments [ 60 , 61 , 68 ], however, limitations of this method included HIV providers not remembering to refer [ 41 ] and patient barriers such as confusion over the need for the referral which may result in skipping geriatric appointments [ 41 ]. One model of care implemented patient reminders to help ensure appointments were attended [ 64 ]. Two articles ( n  = 2/13, 15%) relied on referrals through an AIDS service organization [ 62 , 63 ]Moreover, across the models, patients could choose to be referred to one service (e.g. cardiology clinic) or multiple (e.g., geriatrics clinic) [ 60 , 68 ]. Patients could choose to have follow up with the geriatrician[ 28 ] and/or be connected with a primary care provider [ 41 ]. Clinics have developed guidelines and policies to guide the operation of services [ 28 ].

ii) Implementation of evidence-based screening

All articles described the incorporation of gold-standard, evidence-based screening practices into their geriatric care. Mood symptoms were assessed using the Hospital Anxiety and Depression Scale [ 60 , 62 , 63 , 67 ], the Geriatric Depression Scale [ 62 , 63 ], the Older Peoples’ Quality of Life Questionnaire [ 67 ] and/or the Patient Health Questionnaire [ 39 ], while cognition was assessed using tools such as the Montreal Cognitive Assessment [ 60 ]. CGAs were followed up with direct actions such as counseling (e.g., about ageing) [ 28 , 39 , 60 ], assessments of comorbidities, age-appropriate preventative health screening[ 41 , 60 , 61 ], and pharmacist reviews targeting polypharmacy and drug safety [4, NaN]. In addition to the CGA, clinics offered British HIV Association (BHIVA)-recommended screening (i.e., guidelines for the management of HIV), an antiretroviral review, a functional review and full medication review [ 28 , 66 ]. Emotional support was monitored using the ‘Therapy Content Checklist’ [ 62 , 63 ]. The goal of using valid measurements was to promote best practice [ 59 ].

Model Component 3: Support for holistic care

As older persons are more likely to experience cumulative health challenges that affect their quality of life, models of care for people ageing with HIV have incorporated a comprehensive holistic management approach. All included articles adhered and contributed to this model component. Clinics provided care for patients with multimorbidity [ 60 , 61 , 66 , 67 ] and helped them to overcome socioeconomic challenges [ 41 ], substance use disorders [ 60 , 65 ] and social isolation [ 60 , 62 , 63 ] by understanding their backgrounds[ 41 ]. Physical health consultations considered cardiovascular disease, dental health, eye health and bone health[ 28 , 41 , 60 , 61 , 64 , 68 ] to address HIV and metabolic-related complications [ 41 ]. Care plans incorporated medication prescriptions [ 28 , 39 , 60 , 61 , 66 , 67 , 68 ], preventative screening [ 28 , 39 , 60 , 61 , 64 , 65 , 66 , 67 , 68 ], age-related disease processes (e.g., cognitive-testing) [ 28 , 39 , 41 , 59 , 60 , 61 , 64 , 65 , 66 , 67 , 68 ], psychosocial interventions to improve social networks and mental health [ 28 , 39 , 59 , 60 , 62 , 63 , 64 , 65 ], exercise and nutrition regimens [ 39 ] and behavioural health supports (e.g., smoking cessation, therapy) [ 28 , 39 , 59 , 60 , 61 , 62 , 63 , 64 , 67 ] to meet the holistic needs of each patient. Spiritual support delivered through religious leaders, mental health counselors/therapists, and emotional support volunteers was also offered [ 59 , 64 ].

i)Comprehensive geriatric assessment

Most models of care ( n  = 8/13,61.5%) involved a CGA [ 28 , 39 , 41 , 60 , 61 , 66 , 68 ] or utilized geriatric screening tools [ 65 ] to guide holistic care plans. Most CGAs were delivered by geriatricians who would write full consultation notes [ 39 , 60 , 61 ], although non-geriatrician health care providers were often trained to administer geriatric screening tests [ 41 , 64 ]. The CGA provided an overview of physical and mental health, as well as social support systems [ 39 ], using validated scales [ 39 ].

ii)Supporting self-management

The models of care in six articles ( n  = 6/13, 46%) aimed to support the self-management of older adults living with HIV. The goal of self-management was to enable patients to better manage their health outside of the clinic setting by involving older adults in medical decision-making [ 60 , 68 ] and managing their chronic illnesses [ 59 , 60 , 61 ]. Self-management involved education [ 39 , 59 , 60 , 65 ] and coaching [ 28 ] about health behaviours, guidance for choosing appropriate interventions [ 39 , 59 , 65 ] to improve a patient’s health status [ 28 , 65 ], and increased health care utilization to improve patient involvement in care [ 60 , 65 ]. Some models involved classes where older adults could learn about various health conditions [ 60 , 61 , 62 , 63 ]. Where self-management was not possible due to cognitive or functional impairments, healthcare professionals provided education to individuals’ social support networks such as to encourage their inclusion in care [ 39 , 59 ]. To evaluate self-management, some studies included surveys about knowledge in the evaluations of the clinic models [ 60 , 61 ].

Our scoping review of the literature identified thirteen articles describing geriatric models of care for older adults living with HIV. The identified models came from two countries, the USA and the United Kingdom, and incorporated screening for geriatric syndromes [ 28 , 39 , 41 , 60 , 61 , 65 , 66 , 68 ]. From these articles, we identified three overarching key model components: Collaboration and Integration; Organization of Geriatric Care; and Support for Holistic Care. The models of care were largely delivered by a consulting geriatrician [ 39 , 41 , 60 , 61 , 64 , 65 ] via a referral from an HIV provider [ 41 ], from a joint clinic model involving a geriatrician and HIV physician[ 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 ], or through a dually-trained HIV-geriatrics provider [ 41 , 62 , 63 , 68 ]. However, some models did not involve a geriatrician [59, NaN]. Table 4 summarizes the future recommendations from the included articles.

Our review identified that most models of geriatric-HIV care are delivered by multidisciplinary teams that facilitate integrated health and social care. Multidisciplinary providers who work in team-based care models have been shown to improve clinical outcomes among HIV patients [ 70 , 71 , 72 , 73 ]. This study provided examples of collaborations in which practitioners worked together to meet the diverse needs of patients. Our data expand this finding by suggesting that multidisciplinary care providers help to facilitate referrals to even more providers, particularly those working in community settings, to ensure care continuity and care coordination to meet holistic needs for support. However, it is important for future research to further understand what staffing model of multidisciplinary team care contributes best to the quadruple aim of optimizing health system performance (i.e., improving the individual experience of care; improving the health of populations; reducing the per capita cost of healthcare and creating better provider experiences [ 74 ]) and the limitations of the existing approaches. Moreover, given the shortage of geriatricians [ 45 ] to meet patient needs, it is important to consider the transferability of models that involve a geriatrician [ 39 , 41 , 60 , 61 , 64 , 65 ][ 66 , 67 , 68 ], or dually-trained HIV-geriatrics provider [ 41 , 62 , 63 , 68 ].

The increasing proportion of older adults living with multimorbidity, including HIV, has evoked calls for tailored geriatric services that respond to their evolving needs. Our results suggest that care delivery should address multiple complex and multidimensional aspects of health and wellness, including psychosocial needs such as strategies to reduce social isolation. However, none of the articles discussed the provision of palliative or hospice care. Palliative care has been posited to augment HIV patients’ health and social care outcomes [ 75 ]. Implementation science may help researchers identify how to implement novel palliative care interventions into exiting practices and support uptake and sustainability by considering why, how and in what circumstances barriers and facilitators may be present [ 76 ]. In addition, older adults were described as being decision makers in their care such as being able to choose the follow up services they receive [ 60 , 68 ]. While some programs sought the input of older adults (e.g., through focus groups, none explicitly mentioned partnering with older adults to co-design their models of HIV care. Other HIV interventions have included individuals living with HIV on their steering committees and in development teams, such that care meaningfully reflects their wishes and preferences [ 77 , 78 , 79 ]. These interventions do not include older adults. Future models of care may wish to engage older adults in co-design to conceptualize and brainstorm program delivery [ 80 , 81 ].

Our review identified several areas of research with limited information. Most literature was published in the USA. Only one article mentioned the role of family caregivers in the care of HIV [ 59 ]. However, individuals living with HIV may receive support from non-kin family caregivers, such as friends [ 82 ]. Research is needed to better understand how broader conceptualizations of family can be embedded into the multidisciplinary care teams to help facilitate family-centered care [ 43 , 83 ]. Moreover, none of the articles mentioned care being delivered in the context of nursing or long-term care homes, nor did they mention offered referrals to long-term care facilities or services. Research is needed to determine the optimal approach for delivering geriatric services in long-term care settings to older adults living with HIV. Strategies are also needed to effectively embed HIV care into the already overburdened and under-resourced long-term care sector. While telehealth has proven to be an effective strategy for delivering HIV care [ 84 , 85 ], particularly in rural and remote communities where specialists may not be readily available [ 86 ], additional research is needed to identify the best practices and limitations for delivering geriatric-focused models of care virtually. Lastly, no studies have evaluated how to best incorporate culturally-sensitive geriatric care across racial and ethnic groups [ 87 , 88 ]. Thus, more data are needed to develop culturally-informed models of care to better engage and care for diverse populations of older adults living with HIV, particularly for adults with certain racial and ethnic backgrounds who may face pervasive stigma for accessing HIV care [ 89 , 90 ].

Limitations

As with any review, our findings must be considered within the context of the limitations. Despite our best efforts (i.e., multiple databases, peer-reviewed strategy, screening in duplicate, bibliographic searches, contacting authors of the reviewed articles), we may have inadvertently missed potentially relevant articles. Moreover, we may have missed papers of programs not yet described in the literature, such as those recently funded or piloted. Similarly, we limited the inclusion criteria to studies available in English due to resource constraints (i.e., lack of funding to support translation) and, consequently, may have biased our included studies to those published in English-speaking countries [ 91 ]. However, the intention of scoping reviews is to provide an overview or “map” of the breadth of existing literature, and thus, future exploration is warranted that builds upon our search strategy. Studies focused on individuals with HIV, but did not include description of older adults living with co-morbidities that impair healthcare decision-making, such as dementia, making it difficult to comment about models of care for individuals who require decision-making support. Lastly, stakeholders in implementing, delivering and receiving models of care (e.g., individuals with HIV, policy-makers, healthcare professionals) were not involved in the study design nor analysis.

Conclusions

Our review suggests that novel models of geriatric care for older adults living with HIV should include collaboration and integration, an organization of care that considers appropriate and timely referrals, communication of medical information and the implementation of evidence-based recommendations, as well as a holistic understanding of the dimensions of care, such that they support self-management. This proposed geriatric-based model can provide the framework to inform future implementation science and evaluative research to support further refining and developing this model. However, further research is needed to inform models of geriatric-HIV care in long-term care settings. Given the increasing number of older adults living with HIV, the development of best-practice models of integrated care can hopefully guide healthcare professionals to provide optimal care in the context of the complexities of care for older adults with HIV.

Availability of data and materials

The analysis files and data used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Comprehensive Geriatric Assessment

Human Immunodeficiency Virus

Organization WH. Consolidated guidelines on HIV prevention, testing, treatment, service delivery and monitoring: recommendations for a public health approach: World Health Organization 2021.

Gardner EM, McLees MP, Steiner JF, et al. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis. 2011;52(6):793–800.

Article   PubMed   PubMed Central   Google Scholar  

Higgins JA, Hoffman S, Dworkin SL. Rethinking gender, heterosexual men, and women’s vulnerability to HIV/AIDS. Am J Public Health. 2010;100(3):435–45.

Marcus JL, Chao CR, Leyden WA, et al. Narrowing the gap in life expectancy between HIV-infected and HIV-uninfected individuals with access to care. Journal of acquired immune deficiency syndromes (1999) 2016;73(1):39.

Nakagawa F, May M, Phillips A. Life expectancy living with HIV: recent estimates and future implications. Curr Opin Infect Dis. 2013;26(1):17–25.

Article   PubMed   Google Scholar  

Guaraldi G, Milic J, Mussini C. Aging with HIV. Curr HIV/AIDS Rep. 2019;16(6):475–81.

Sankar A, Nevedal A, Neufeld S, et al. What do we know about older adults and HIV? A review of social and behavioral literature. AIDS Care. 2011;23(10):1187–207.

Flaer PJ, Benjamin PL, Malow RM, et al. The growing cohort of seniors with HIV/AIDS: changing the scope of Medicare Part D. AIDS Care. 2010;22(7):903–8.

Autenrieth CS, Beck EJ, Stelzle D, et al. Global and regional trends of people living with HIV aged 50 and over: Estimates and projections for 2000–2020. PLoS ONE. 2018;13(11): e0207005.

Yendewa GA, Poveda E, Yendewa SA, et al. HIV/AIDS in Sierra Leone: Characterizing the hidden epidemic. AIDS Reviews 2018;20(2):104–13. doi: https://dx.doi.org/ https://doi.org/10.24875/AIDSRev.M18000022

Desmarais P, Gao AF, Lanctôt K, et al. White matter hyperintensities in autopsy-confirmed frontotemporal lobar degeneration and Alzheimer’s disease. Alzheimer’s research & therapy. 2021;13(1):129. https://doi.org/10.1186/s13195-021-00869-6[publishedOnlineFirst:2021/07/15] .

Article   Google Scholar  

Buchacz K, Baker RK, Palella FJ Jr, et al. Disparities in prevalence of key chronic diseases by gender and race/ethnicity among antiretroviral-treated HIV-infected adults in the US. Antivir Ther. 2013;18(1):65–75.

Mateen FJ, Mills EJ. Aging and HIV-Related Cognitive Loss. JAMA, J Am Med Assoc. 2012;308(4):349–50. https://doi.org/10.1001/jama.2012.8538 .

Article   CAS   Google Scholar  

Kong AM, Pozen A, Anastos K, et al. Non-HIV Comorbid Conditions and Polypharmacy Among People Living with HIV Age 65 or Older Compared with HIV-Negative Individuals Age 65 or Older in the United States: A Retrospective Claims-Based Analysis. AIDS Patient Care STDS. 2019;33(3):93–103. https://doi.org/10.1089/apc.2018.0190 .

McMillan JM, Gill MJ, Power C, et al. Comorbidities in Older Persons with Controlled HIV Infection: Correlations with Frailty Index Subtypes. AIDS Patient Care STDS. 2020;34(7):284–94. https://doi.org/10.1089/apc.2020.0051 .

Erlandson KM, Karris MY. HIV and aging: reconsidering the approach to management of comorbidities. Infect Dis Clin. 2019;33(3):769–86.

Emlet CA, Brennan DJ, Brennenstuhl S, et al. The impact of HIV-related stigma on older and younger adults living with HIV disease: does age matter? AIDS Care. 2015;27(4):520–8.

Emlet CA. Social, economic, and health disparities among LGBT older adults. Generations. 2016;40(2):16–22.

PubMed   PubMed Central   Google Scholar  

Alexandra Marshall S, Brewington KM, Kathryn Allison M, et al. Measuring HIV-related stigma among healthcare providers: a systematic review. AIDS Care. 2017;29(11):1337–45.

Article   CAS   PubMed   Google Scholar  

Hibbert M, Wolton A, Crenna-Jennings W, et al. Experiences of stigma and discrimination in social and healthcare settings among trans people living with HIV in the UK. AIDS Care. 2018;30(7):836–43.

Emlet CA, Brennan DJ, Brennenstuhl S, et al. Protective and risk factors associated with stigma in a population of older adults living with HIV in Ontario. Canada AIDS care. 2013;25(10):1330–9.

Fritsch T. HIV/AIDS and the older adult: An exploratory study of the age-related differences in access to medical and social services. J Appl Gerontol. 2005;24(1):35–54.

Wallach IS, Brotman SH. Gaps in health and social care services to older adults living with HIV: a qualitative study on the perspectives of older adults and service providers. NursCare Open Access J. 2019;6(1):28–33.

Google Scholar  

Jones HT, Barber TJ. How do geriatricians feel about managing older people living with HIV? A scoping review European geriatric medicine. 2022;13(4):987–97. https://doi.org/10.1007/s41999-022-00642-4 .

Chambers LA, Wilson MG, Rueda S, et al. Evidence Informing the Intersection of HIV, Aging and Health: A Scoping Review. AIDS Behav. 2014;18(4):661. https://doi.org/10.1007/s10461-013-0627-5 .

Liddy C, Shoemaker ES, Crowe L, et al. How the delivery of HIV care in Canada aligns with the Chronic care model: A qualitative study. PLoS ONE. 2019;14(7):e0220516-e220616. https://doi.org/10.1371/journal.pone.0220516 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Mapp F, Hutchinson J, Estcourt C. A systematic review of contemporary models of shared HIV care and HIV in primary care in high-income settings. Int J STD AIDS. 2015;26(14):991–7. https://doi.org/10.1177/0956462415577496 .

Siegler EL, Burchett CO, Glesby MJ. Older people with HIV are an essential part of the continuum of HIV care. Journal of the International AIDS Society 2018;21(10):e25188-n/a. doi: https://doi.org/10.1002/jia2.25188

Sánchez-Conde M, Díaz-Alvarez J, Dronda F, et al. Why are people with HIV considered “older adults” in their fifties? European Geriatric Medicine. 2019;10(2):183–8.

Grov C, Golub SA, Parsons JT, et al. Loneliness and HIV-related stigma explain depression among older HIV-positive adults. AIDS Care. 2010;22(5):630–9.

Greene M, Shi Y, Boscardin J, Sudore R, Gandhi M, Covinsky K. Geriatric conditions and healthcare utilisation in older adults living with HIV. Age and Ageing. 2022 May;51(5):afac093.

Sangarlangkarn A, Appelbaum JS. Comprehensive Geriatric Assessment in Older Persons With HIV. Open forum infectious diseases 2020;7(11):ofaa485-ofaa85. doi: https://doi.org/10.1093/ofid/ofaa485

Yip KF, Wong TH, Alhamid SM, et al. Integrating advance care planning as part of comprehensive geriatric assessment for hospitalised frail elderly patients: findings of a cross-sectional study. Singapore Med J. 2020;61(5):254–9. https://doi.org/10.11622/smedj.2019098 .

Guaraldi G. Rockwood K. Geriatric-HIV medicine is born: Oxford University Press US; 2017. p. 507–9.

Guaraldi G, Palella FJ Jr. Clinical implications of aging with HIV infection: perspectives and the future medical care agenda. AIDS (London, England). 2017;31:S129–35.

Brañas F, Ryan P, Troya J, et al. Geriatric-HIV Medicine: the geriatrician’s role. European geriatric medicine. 2019;10(2):259–65. https://doi.org/10.1007/s41999-018-0144-1 .

Sangarlangkarn A, Apornpong T, Justice AC, et al. Screening tools for targeted comprehensive geriatric assessment in HIV-infected patients 50 years and older. Int J STD AIDS. 2019;30(10):1009–17. https://doi.org/10.1177/0956462419841478 .

Morrow H, Horner M, Thomson-Glover R. 992 RESULTS OF A PILOT HIV/FRAILTY CLINIC - CAN COMPREHENSIVE GERIATRIC ASSESSMENT BENEFIT FRAIL PEOPLE LIVING WITH HIV? Age and ageing 2022;51(Supplement_2) doi: https://doi.org/10.1093/ageing/afac126.043

Bitas C, Jones S, Singh HK, et al. Adherence to Recommendations from Comprehensive Geriatric Assessment of Older Individuals with HIV. Journal of the International Association of Providers of AIDS Care. 2019;18:2325958218821656–56. https://doi.org/10.1177/2325958218821656 .

Innovation AfC. Understanding the Process to Develop a Model of Care: An ACI Framework: Agency for Clinical Innovation Chatswood NSW, 2013.

Davis AJ, Greene M, Siegler E, et al. Strengths and Challenges of Various Models of Geriatric Consultation for Older Adults Living With Human Immunodeficiency Virus. Clin Infect Dis. 2022;74(6):1101–6. https://doi.org/10.1093/cid/ciab682 .

Sinha SK, Bessman ES, Flomenbaum N, et al. A systematic review and qualitative analysis to inform the development of a new emergency department-based geriatric case management model. Ann Emerg Med. 2011;57(6):672–82.

Kokorelias KM, Gignac MA, Naglie G, et al. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019;19(1):1–11.

Korthuis PT, McCarty D, Weimer M, et al. Primary care–based models for the treatment of opioid use disorder: A scoping review. Ann Intern Med. 2017;166(4):268–78.

Krause KE, Kokorelias KM, Sinha SK. A systematic review and qualitative analysis of geriatric models of care for rural and remote populations. Rural Remote Health. 2022;22(3):7486–586.

PubMed   Google Scholar  

Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32.

Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5(1):1–9.

Colquhoun HL, Levac D, O’Brien KK, et al. Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014;67(12):1291–4.

Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–73.

McGowan J, Sampson M, Salzwedel DM, et al. PRESS peer review of electronic search strategies: 2015 guideline statement. J Clin Epidemiol. 2016;75:40–6.

Bramer WM, Giustini D, de Jonge GB, et al. De-duplication of database search results for systematic reviews in EndNote. Journal of the Medical Library Association: JMLA. 2016;104(3):240.

Babineau J. Product review: covidence (systematic review software). Journal of the Canadian Health Libraries Association/Journal de l’Association des bibliothèques de la santé du Canada. 2014;35(2):68–71.

Bramer WM, Milic J, Mast F. Reviewing retrieved references for inclusion in systematic reviews using EndNote. Journal of the Medical Library Association: JMLA. 2017;105(1):84.

Haddaway NR, Grainger MJ, Gray CT. Citationchaser: A tool for transparent and efficient forward and backward citation chasing in systematic searching. Research Synthesis Methods 2022

Miles MB, Huberman AM, Saldaña J. Qualitative data analysis: A methods sourcebook: Sage publications 2018.

Beekhuyzen J. Putting the pieces of the puzzle together: Using Nvivo for a literature review. Proceedings of QualIT2007: Qualitative Research, From the Margins to the Mainstream, Wellington, New Zealand, Victoria University of Wellington 2007:18–20.

Bissonnette JM. Adherence: a concept analysis. J Adv Nurs. 2008;63(6):634–43.

Bhatta M, Nandi S, Dutta N, et al. HIV care among elderly population: Systematic review and meta-analysis. AIDS research and human retroviruses 2020;36(ja):475–89. doi: https://doi.org/10.1089/AID.2019.0098

Garvey C. AIDS care for the elderly: A community-based approach. AIDS Patient Care. 1994;8(3):118–20. https://doi.org/10.1089/apc.1994.8.118 .

Greene M, Myers J, Tan JY, et al. The Golden Compass Program: Overview of the Initial Implementation of a Comprehensive Program for Older Adults Living with HIV. Journal of the International Association of Providers of AIDS Care. 2020;19:2325958220935267–67. https://doi.org/10.1177/2325958220935267 .

Greene ML, Tan JY, Weiser SD, et al. Patient and provider perceptions of a comprehensive care program for HIV-positive adults over 50 years of age: The formation of the Golden Compass HIV and aging care program in San Francisco. PLoS ONE. 2018;13(12):e0208486-e208586. https://doi.org/10.1371/journal.pone.0208486 .

Heckman TG, Heckman BD, Anderson T, et al. Common Factors and Depressive Symptom Relief Trajectories in Group Teletherapy for Persons Ageing with HIV: Common Factors and Depression in HIV-infected Older Adults. Clin Psychol Psychother. 2017;24(1):139–48. https://doi.org/10.1002/cpp.1989 .

Heckman TG, Sikkema KJ, Hansen N, et al. A randomized clinical trial of a coping improvement group intervention for HIV-infected older adults. J Behav Med. 2010;34(2):102–11. https://doi.org/10.1007/s10865-010-9292-6 .

Ruiz M, Cefalu C, Ogbuokiri J. A Dedicated Screening Program for Geriatric HIV-Infected Patients Integrating HIV and Geriatric Care. Journal of the International Association of Physicians in AIDS Care (Chicago, Ill : 2002) 2010;9(3):157–61. doi: https://doi.org/10.1177/1545109710367519

Schmalzle SA, Viviano NA, Mohanty K, et al. People aging with HIV - protecting a population vulnerable to effects of COVID-19 and its control measures. AIDS Care. 2022;34(11):1355–63. https://doi.org/10.1080/09540121.2021.2020208 .

Cresswell FV, Levett T. Specialist care of older adults with HIV infection in the UK: a service evaluation. HIV Med. 2017;18(7):519–24. https://doi.org/10.1111/hiv.12481 .

Levett T, Alford K, Roberts J, et al. Evaluation of a combined hiv and geriatrics clinic for older people living with hiv: The silver clinic in brighton, uk. Geriatrics (Basel, Switzerland). 2020;5(4):1–12. https://doi.org/10.3390/geriatrics5040081 .

Tan JY, Greene M, Blat C, et al. Examining the Impact of the Golden Compass Clinical Care Program for Older People with HIV: A Qualitative Study. AIDS Behav. 2022;26(5):1562–71. https://doi.org/10.1007/s10461-021-03509-0 .

Siegler, E. L., Burchett, C. O., & Glesby, M. J. (2018). Older people with HIV are an essential part of the continuum of HIV care.  Journal of the International AIDS Society ,  21 (10).

Elgalib A, Al-Sawafi H, Kamble B, et al. Multidisciplinary care model for HIV improves treatment outcome: a single-centre experience from the Middle East. AIDS Care. 2018;30(9):1114–9.

Handford CD, Tynan A-M, Agha A, et al. Organization of care for persons with HIV-infection: a systematic review. AIDS Care. 2017;29(7):807–16.

Sherer R, Stieglitz K, Narra J, et al. HIV multidisciplinary teams work: support services improve access to and retention in HIV primary care. AIDS Care. 2002;14(sup1):31–44.

Soto TA, Bell J, Pillen M, et al. Literature on integrated HIV care: a review. AIDS Care. 2004;16(sup1):43–55.

Bodenheimer T, Sinsky C. From triple to quadruple aim: care of the patient requires care of the provider. The Annals of Family Medicine. 2014;12(6):573–6.

Simms V, Higginson IJ, Harding R. Integration of palliative care throughout HIV disease. Lancet Infect Dis. 2012;12(7):571–5.

Demiris G, Parker Oliver D, Capurro D, et al. Implementation science: implications for intervention research in hospice and palliative care. Gerontologist. 2014;54(2):163–71.

Mackworth-Young C, Dringus S, Dauya E, et al. Putting youth at the centre: co-design of a community-based intervention to improve HIV outcomes among youth in Zimbabwe. Wellcome open research. 2022;7:53.

Marent B, Henwood F, Darking M, et al. Development of an mHealth platform for HIV care: gathering user perspectives through co-design workshops and interviews. JMIR Mhealth Uhealth. 2018;6(10): e9856.

Lee MJ, Onyango D, Hamza H, et al. Surveying testing preferences in Black, Latin American, and other minorities for the co-design of digital vending machines for HIV self-testing. Int J STD AIDS. 2020;31(2):158–65.

Tong C, Kernoghan A, Lemmon K, et al. Lessons and Reflections From an Extended Co-design Process Developing an mHealth App With and for Older Adults: Multiphase, Mixed Methods Study. JMIR aging. 2022;5(4): e39189.

Long-term co-design guidelines: Empowering older adults as co-designers of social robots. 2021 30th IEEE International Conference on Robot & Human Interactive Communication (RO-MAN); 2021. IEEE.

Prachakul W, Grant JS. Informal caregivers of persons with HIV/AIDS: A review and analysis. J Assoc Nurses AIDS Care. 2003;14(3):55–71.

Nelson MK. Fictive kin, families we choose, and voluntary kin: What does the discourse tell us? J Fam Theory Rev. 2013;5(4):259–81.

Dandachi D, Dang BN, Lucari B, et al. Exploring the attitude of patients with HIV about using telehealth for HIV care. AIDS Patient Care STDS. 2020;34(4):166–72.

Dandachi D, Lee C, Morgan RO, et al. Integration of telehealth services in the healthcare system: with emphasis on the experience of patients living with HIV. J Investig Med. 2019;67(5):815–20.

Ohl M, Dillon D, Moeckli J, et al. Mixed-methods evaluation of a telehealth collaborative care program for persons with HIV infection in a rural setting. J Gen Intern Med. 2013;28(9):1165–73.

Bucharski D, Reutter LI, Ogilvie LD. “You need to know where we’re coming from”: Canadian aboriginal women’s perspectives on culturally appropriate HIV counseling and testing. Health Care Women Int. 2006;27(8):723–47.

Sauceda JA, Brooks RA, Xavier J, et al. From theory to application: a description of transnationalism in culturally-appropriate HIV interventions of outreach, access, and retention among Latino/a populations. J Immigr Minor Health. 2019;21(2):332–45.

Chakrapani V, Gulfam FR, Arumugam V, et al. Intersectional stigma and gender non-affirmation hinder HIV care engagement among transgender women living with HIV in India. AIDS care 2022:1–9.

Ziersch A, Walsh M, Baak M, et al. “It is not an acceptable disease”: A qualitative study of HIV-related stigma and discrimination and impacts on health and wellbeing for people from ethnically diverse backgrounds in Australia. BMC Public Health. 2021;21(1):1–15.

Neimann Rasmussen L, Montgomery P. The prevalence of and factors associated with inclusion of non-English language studies in Campbell systematic reviews: A survey and meta-epidemiological study. Syst Rev. 2018;7(1):129–229. https://doi.org/10.1186/s13643-018-0786-6 .

Download references

Acknowledgements

We would like to thank and acknowledge the contributions of Charmaine De Castro, Information Specialist at the Mount Sinai Hospital– Sinai Health System, for providing guidance on the search strategy development, and conducting the literature search. We would like to thank and acknowledge the contributions of the authors who replied to our emails for contributing to our analysis.

This work was supported by Sinai Health’s Healthy Ageing and Geriatrics Program Research Fund.

Author information

Authors and affiliations.

Division of Geriatric Medicine, Department of Medicine, Sinai Health System and University Health Network, Suite 475 - 600 University Avenue, Toronto, ON, M5G 1X5, Canada

Kristina Marie Kokorelias, Anna Grosse & Luxey Sirisegaram

Department of Occupational Science & Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, 160 - 500 University Ave, Toronto, ON, M5G 1V7, Canada

Kristina Marie Kokorelias

Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada

Division of Geriatric Medicine, Department of Medicine, Medical Sciences Building, University of Toronto, 1 King’s College Cir, Toronto, ON, M5S 1A8, Canada

Anna Grosse & Luxey Sirisegaram

Department of Medicine, Medical Sciences Building, The University of Toronto, King’s College Cir, Toronto, ON, M5S 1A8, Canada

Alice Zhabokritsky

Infectious Diseases, Department of Medicine, University Health Network, 610 University Ave, Toronto, Toronto, ON, M5G 2M9, Canada

CIHR Canadian HIV Trails Network, 570-1081 Burrard Street, Vancouver, BC, V6Z 1Y6, Canada

You can also search for this author in PubMed   Google Scholar

Contributions

All authors contributed to the project idea and initiated the project. KMK and LS conceptualized the study design. KMK wrote the first draft of this manuscript and revised the article during the review process. KMK and LS provided guidance to the Information Specialist with respect to the design of the search strategy. All authors finalized the literature search strategy. KMK piloted the search strategy. AG and LS were involved in editing and revising the manuscript. All authors approved the final version of the protocol and are accountable for all aspects of the work.

Corresponding author

Correspondence to Luxey Sirisegaram .

Ethics declarations

Ethics approval and consent to participate.

Not Required.

Consent for publication

Competing interests.

The authors declare that they have no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1., rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Kokorelias, K.M., Grosse, A., Zhabokritsky, A. et al. Understanding geriatric models of care for older adults living with HIV: a scoping review and qualitative analysis. BMC Geriatr 23 , 417 (2023). https://doi.org/10.1186/s12877-023-04114-7

Download citation

Received : 18 January 2023

Accepted : 16 June 2023

Published : 08 July 2023

DOI : https://doi.org/10.1186/s12877-023-04114-7

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

  • Models of care
  • Older adults
  • Qualitative
  • Scoping review

BMC Geriatrics

ISSN: 1471-2318

literature review on primary healthcare

IMAGES

  1. (PDF) The role of artificial intelligence in healthcare: a structured

    literature review on primary healthcare

  2. A Systematic Review of the Literature on Health Literacy in... : Nurse

    literature review on primary healthcare

  3. Literature review healthcare.docx

    literature review on primary healthcare

  4. (PDF) Conducting a Literature Review on the Effectiveness of Health

    literature review on primary healthcare

  5. Medical Literature Review Sample

    literature review on primary healthcare

  6. Practice in the Field of Healthcare: Literature Review

    literature review on primary healthcare

VIDEO

  1. LITERATURE REVIEW HPEF7063 ACADEMIC WRITING FOR POSTGRADURATES

  2. Literature Review for Research #hazarauniversity #trendingvideo #pakistan

  3. A literature review on online learning

  4. LITERATURE REVIEW

  5. The role of Primary Healthcare in the response of COVID-19: Case studies from the Region

  6. Primary Health Care

COMMENTS

  1. Communication in Primary Healthcare: A State-of-the-Art Literature

    Overview and background. Primary healthcare (PHC) is a key element of health systems in many countries, distinct from other aspects of health services delivery systems, such as specialty outpatient care (see Ekberg et al., Citation 2024 /this issue) or emergency medical care (see Riou, Citation 2024).PHC is widely recognized as the "front door" into health care systems, providing ...

  2. Telehealth in Primary Health Care: A Scoping Review of the Literature

    Telehealth has various benefits in primary health care (PHC), ranging from seamless access to health services for people in remote places to self-management promotion, patient empowerment, cost reduction of unnecessary referrals, and decreasing the need for commuting to seek medical care.

  3. Systematic Reviews and Meta-analysis: Understanding the Best Evidence

    A systematic review is a summary of the medical literature that uses explicit and reproducible methods to systematically search, critically appraise, and synthesize on a specific issue. ... Cochrane Primary Health Care Field is a systematic review of primary healthcare research on prevention, treatment, rehabilitation, and diagnostic test ...

  4. Vulnerability and Primary Health Care: An Integrative Literature Review

    An integrative literature review was carried out with the inclusion criteria: articles in English, full text, peerreviewed, related to vulnerability and primary health care, with the explicit concept of vulnerability, and published until July 31, 2020. The electronic databases accessed were by crossing the descriptors "vulnerability ...

  5. What improves access to primary healthcare services in rural

    The findings of this systematic literature review can be used by healthcare professionals, researchers and policy makers to improve healthcare service delivery in rural communities. ... Banda HT, Mbera GB, Mangani C, de Sousa A, Nkhono E, Jemu S, Muula AS. Primary Health Care in rural Malawi - a qualitative assessment exploring the relevance of ...

  6. A Systematic Literature Review Comparing Primary and ...

    A Systematic Literature Review Comparing Primary and Community Health Care Indicators and Measurement Frameworks. Author links open overlay panel Nour El ... and PCGs in Ontario, while others may be specific to the unique needs of a region or population (5). Each LHIN has a Primary Health Care Council to provide a forum to disseminate best ...

  7. A Review of Literature on Access to Primary Health Care

    A review of the literature on access to primary health care was conducted by Ansari [21] in 2007 who observed that whilst policy-makers are concerned about providing equal access to health care ...

  8. Primary Health Care

    Primary Health Care: A Review of the Literature Through 1972 RICHARD J. GROSS, B.S. The descriptive literature on primary health care reveals an abundance of articles, without documentation, extolling or disparaging different forms of primary care. Experimental studies have measured the effects of making a clinic setting more comprehensive.

  9. Communication in Primary Healthcare: A State-of-the-Art Literature

    DOI: 10.1080/08351813.2024.2305038 Corpus ID: 268896973; Communication in Primary Healthcare: A State-of-the-Art Literature Review of Conversation-Analytic Research @article{Barnes2024CommunicationIP, title={Communication in Primary Healthcare: A State-of-the-Art Literature Review of Conversation-Analytic Research}, author={Rebecca K. Barnes and Catherine J. Woods}, journal={Research on ...

  10. A Comparative Literature Review of Integrated Approach in Health Care

    This literature review explores the definitions, models, and outcomes of an integrated approach to delivering health services. The concept of integrated healthcare emerged in the 1970s and was influenced by the primary healthcare model proposed by the World Health Organization in the Alma-Ata Declaration on Primary Health Care in 1978. This literature review aims to examine how integration is ...

  11. PDF Integrating Behavioral Health and Primary Care

    The original goal of this literature review was to understand current thinking about workforce competencies with regard to integrated behavioral health in primary care. We reviewed the literature to identify the competencies necessary for providers and staff who work in an integrated primary care setting. During the review process, we ...

  12. Integrative literature review: access to primary healthcare services

    Objective: Analyze the scientific production that describes the type of access to primary healthcare services and identify specific populations that have differentiated access to health services. Method: An integrative review. For study selection, the following databases were used: PubMed, Scopus, Bireme, and Cinahl. The sample included 22 national and international articles.

  13. Approaches to prioritising primary health research: a scoping review

    We opted for a scoping review, which is typically used to present 'a broad overview of the evidence pertaining to a topic, irrespective of study quality, to examine areas that are emerging, to clarify key concepts and to identify gaps'. 32 Scoping reviews are an ideal tool to convey the breadth and depth of a body of literature on a given ...

  14. (PDF) A Literature Review on People-Centered Care and ...

    A Literature Review on People-Centered Care and Nursing Practice in Primary Health Care Setting. January 2020; Global Journal of Health Science 12(2):23; ... In primary health care environments ...

  15. Identifying barriers and facilitators to primary care practitioners

    We conducted a scoping review of the literature, using the TDF, to identify barriers and facilitators influencing primary care practitioners' implementation of annual health assessments for people with intellectual disability as part of routine primary care practice. ... Who provides primary health care for people with an intellectual ...

  16. Barriers to Access of Primary Healthcare by Immigrant Populations in

    REVIEW PAPER Barriers to Access of Primary Healthcare by Immigrant Populations in Canada: A Literature Review Salim Ahmed 1 Nusrat S. Shommu 1 Nahid Rumana 2 Gary R. S. Barron 1 Sonja Wicklum 1 Tanvir C. Turin 1,3 Published online: 12 September 2015 Springer Science+Business Media New York 2015 Abstract To summarize information obtained from

  17. Primary Health Care Interventions for Potentially Preventable Ear, Nose

    Primary health care prevention strategies are typically categorized into 3 levels as primary, secondary, and tertiary prevention. 29 Primary and secondary prevention aim to prevent disease or injury before it occurs through health promotion initiatives and screening for early disease. Tertiary prevention is the treatment once a disease has been identified (including medication prescriptions ...

  18. Patient satisfaction in primary health care: a literature review and

    Abstract. This paper reviews the literature on patient satisfaction in primary health care settings. Definitions and models of satisfaction are considered first. Attention is given to the conceptualization of satisfaction by investigators concerned about consumers in general as well as by researchers focusing on consumers of medical services ...

  19. Vulnerability and Primary Health Care: An Integrative Literature Review

    An integrative literature review was carried out with the inclusion criteria: articles in English, full text, peerreviewed, related to vulnerability and primary health care, with the explicit concept of vulnerability, and published until July 31, 2020. The electronic databases accessed were by crossing the descriptors "vulnerability ...

  20. Implementation of Primary Healthcare Services in Community Health

    Primary Health Care (PHC) is integral in attaining the Sustainable Development Goal (SDG) of ensuring healthy lives and promotion of well-being (Lobo et al., 2014). It is a whole of society approach

  21. Approaches to Measure Efficiency in Primary Care: A Systematic

    The search strategy of this systematic literature review was based on databases of both the economic and medical service research literature. As a result, this study review draws on a wide evidence base in order to assess the current state of development of measures to assess primary care efficiency.

  22. Location Analysis of Primary Health Care Centers: A Case ...

    The objective is to provide primary health care to the 53 impoverished neighborhoods through government dispensaries and PHCs. 38 sites have been identified for setting ... (2016) Hierarchical facility location and hub network problems: a literature review. Int J Ind Syst Eng 9(special issue on location allocation and hub modeling):1-22 ...

  23. The Advantage of Literature Reviews for Evidence-Based Practice

    A literature review reporting strategies to prevent type 2 diabetes among youth ( Brackney & Cutshall, 2015) is included and addresses the second priority to address obesity. The National Association of School Nurses (NASN) research priorities focus on the impact of school nursing in a number of areas. NASN also recommends systematic reviews as ...

  24. Palliative care in Primary Health Care: an integrative literature review

    Objectives: to analyze scientific evidence on the implementation and performance of palliative care in Primary Health Care. Methods: an integrative literature review, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, carried out in the PubMed, SciVerse Scopus and LILACS databases, in December 2020, without a time frame.

  25. Prevalence and associated risk factors of resistant hypertension among

    Hypertension (HT) is a major public health problem globally, and it is the commonest chronic disease with a prevalence of 27% among people aged 15 years or above in Hong Kong. There is emerging literature confirmed that patients with resistant hypertension (RHT) give its increased risk for adverse clinical outcomes and higher rate of documented target organ damage.

  26. Public-private partnerships in primary health care: a scoping review

    The Astana Declaration on Primary Health Care reiterated that PHC is a cornerstone of a sustainable health system for universal health coverage (UHC) and health-related Sustainable Development Goals. ... Literature review: Diagnosis and treatment of TB patients: PPM: Patients with TB and those suspected to have TB: Ejaz I et al., 2011 :

  27. Review on epidemiology, disease burden, and treatment patterns of IgA

    Background Immunoglobulin type A (IgA) nephropathy is the most common primary glomerulonephritis (GN) worldwide with higher rates in East and Pacific Asia compared to North America and Europe. Despite high reported prevalence of IgAN in these countries, the overall disease prevalence across Asia is not available. Treatment patterns of IgAN patients across Asian countries have also not been ...

  28. Understanding geriatric models of care for older adults living with HIV

    A scoping review was selected to map the available literature on geriatric models of care for older adults within the context HIV [].The protocol for our scoping review followed the well-established framework outlined by Arksey and O'Malley [] and later refined by Levac et al. [] and Colquhoun et al. [].The framework was selected as it provides guidance to ensure a rigorous scoping review ...