case study chapter 54 management of patients with kidney disorders

• Open access
• Published: 21 May 2024

Exploring the factors influencing evidence-based approaches to advanced chronic kidney disease: a qualitative study involving nurses and physicians

• Elena Pintado-Outumuro 1 , 4 ,
• Victoria Morin-Fraile 2 , 5 ,
• Betlem Salvador-González 3 , 4 ,
• Llúcia Benito 6 , 7 ,
• Maricel Julve-Ibáñez 8 ,
• M.-Pilar Sancho-Campos 9 ,
• Carolina Alves-Tafur 10 &
• Iris Lumillo-Gutiérrez 2 , 4 , 5 , 11  

BMC Primary Care volume  25 , Article number:  177 ( 2024 ) Cite this article

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Metrics details

Advanced chronic kidney disease (ACKD) is associated with a high risk of adverse cardiovascular and renal events and has a significant impact on quality of life and life expectancy. Several studies have identified areas for improvement in their management in primary care. Some professional and environmental factors can act as key barriers to appropriate care.

To analyse attitudes, subjective norms, and perceived behavioural control among primary care professionals related to the implementation of an evidence-based approach for individuals with ACKD in primary care.

Methodology

This was a qualitative study using an interpretative phenomenological approach based on the theory of planned behaviour. Two aspects of the evidence-based approach were explored: the implementation of clinical practice guidelines and the utilisation of electronic kidney disease records within the scope of this study. Primary care nurses and physicians participated in a previous pilot interview and five focus groups. Subsequently, a thematic analysis of the gathered data was conducted.

Thirty-three primary care professionals participated. The emerging themes included: experiences in the management of ACKD (highlighting a distinct profile of older, frail patients with comorbidities masking CKD and a CKD follow-up primarily focused on analytical monitoring and drug adjustment); factors in the professional environment influencing the use of scientific evidence (such as time constraints, excessive electronic health records, and unfamiliar reference guidelines); attitudes towards the application of recommendations on ACKD (recognising limitations of computer systems despite considering them as guidance); and capacities to implement evidence-based recommendations (acknowledging formative needs and challenges in coordinating care with nephrology services).

Conclusions

Several psychological elements identified through the TBP hinder the adequate implementation of an evidence-based approach for individuals with CKD. Attitudes have been identified as factors modulating the use of standardised electronic records. Instead, subjective norms (influences from the professional environment) and perceived behavioral control (perception of capabilities) acted as barriers to the proper application of clinical practice guidelines and standardised records.

Implications for practice

Strategies aimed at optimising the management of people with ACKD should focus not only on training but also on improving attitudes, organisational structures, IT systems and coordination between primary care and nephrology.

Peer Review reports

Chronic kidney disease (CKD) is a major public health problem. The global prevalence of CKD is estimated to be 13% [ 1 ]. Advanced chronic kidney disease (ACKD) comprises individuals with an estimated glomerular filtration rate less than 30 ml/min/1.63 m2 and includes stages G4 and G5 [ 2 ]. It accounts for < 5% of all CKD cases but is associated with a very high risk of adverse cardiovascular and renal events and has a significant impact on quality of life and life expectancy [ 1 , 3 ]. The global mission of the Kidney Disease Improving Global Outcomes (KDIGO) Initiative is to improve the care and health outcomes of people with CKD by promoting coordination, collaboration, and integration of initiatives, while the goals of the International Society of Nephrology are to raise awareness, promote preventive measures, educate professionals in CKD screening, and reduce risk [ 4 ]. These guidelines are the framework of care used by local nephrology societies to promote clinical recommendations to patients in primary care [ 5 , 6 , 7 ]. Currently, the management of ACKD is predominantly performed in the hospital setting. The prevalence of CKD is increasing in association with obesity, diabetes mellitus and aging [ 8 ], and consequently, the number of patients with ACKD will also increase. ACKD is frequently associated with high comorbidity, complexity, and frailty, and approximately one-third of ACKD patients who reach the G5 stage in primary care are not treated with renal replacement therapy [ 9 ]. This percentage is even greater for older individuals. Therefore, the expected increase in the number of ACKD patients will require greater involvement of primary care in its management [ 8 ]. Primary care professionals are in a privileged position to provide care from the earliest to the most advanced stages, especially in the group of elderly people without renal replacement therapy. However, the primary care approach still has room for improvement [ 7 , 10 , 11 , 12 , 13 ]. CKD management, including diagnosis, prognosis evaluation, monitoring, and risk factor control, can improve [ 14 ]. Although the prevalence of CKD is considerable, a large percentage of people with CKD who have improved are unaware that they have CKD, possibly due to a lack of awareness and limited capacity of primary care professionals to adequately identify and treat people with CKD [ 15 ].

Context-specific implementation strategies are necessary to optimise the utilisation of scientific evidence. Moreover, research highlights the need to develop standardised care programmes to improve the quality of care for people with ACKD. Indeed, integration into a model comparable to that of people with other diseases would bring similar benefits [ 10 ]. Standardised follow-up programs could support the clinical practice of primary care professionals [ 12 ] and enhance their evidence base [ 16 ]. However, the literature suggests that standardised records are not widely used [ 17 ], mainly because of barriers in the care setting [ 18 , 19 ]. The attitudes of professionals play a key role in the development of actions and therefore in the use of this evidence [ 20 ]. However, the implementation of clinical practice guideline recommendations and standardised monitoring systems is a complex process that goes beyond the attitudes of professionals [ 21 ]. Some scholars view a lack of knowledge and skills or organisational factors as barriers to implementation [ 22 ]. In fact, the Global Kidney Health Atlas notes that some of the barriers to achieving optimal kidney care include factors related to knowledge, attitudes, professional environment factors, and low disease awareness [ 23 ]. As such, knowledge, skills, and aspects of work organisation could be seen as shapers of the social norms and perceived behavioural control described by some psychological theories, such as the theory of planned behaviour (TPB) [ 20 ]. The TPB is among the most suitable for elucidating and forecasting human behaviour because it pertains to decision-making. According to this theory, behaviour is shaped by a behavioural intention, which, in turn, is influenced by an individual’s attitude towards the behaviour, subjective norms, and perceived behavioural control. Attitude refers to the evaluative belief regarding the outcomes of engaging in a particular behaviour. Subjective norms represent the social pressure to conform to a specific course of action, while behavioural control encompasses one's capability to execute the perceived behaviour, influenced by preidentified obstacles and impediments [ 24 ]. As a general guideline, the more favourable the attitude and subjective norm are, and the greater the perceived behavioural control is, the stronger an individual's inclination to enact the contemplated behaviour [ 20 ].

Following this line of argument, to gain a deeper understanding of the factors that condition the evidence-based management of people with ACKD in primary care, we performed a qualitative study to explore the psychosocial elements that modulate such management according to the TPB. The aim of this study was to specifically analyse the attitudes, subjective norms, and perceived behavioural control of primary care professionals in managing individuals with ACKD within the primary care setting.

General description

This qualitative study was part of an exploratory mixed-methods study that will form the basis for the implementation of interventions to improve the management of people with ACKD in the Atenció Primària Metropolitana Sud, a primary care setting south of Barcelona. This area provides care to 1,370,709 people and has 9,196 professionals working in 61 primary care centres.

We used an interpretative phenomenological approach [ 25 , 26 ] in which experiences are investigated from the perspective of the individual [ 27 ]. Focus group accounts were collected from professionals regarding their attitudes, subjective norms, and behavioural control [ 20 ] in the management of people with ACKD. The recommended consolidated criteria for reporting qualitative research were followed [ 28 ].

The study was approved by the reference primary care Fundació Institut Universitari per la Recerca a l'Atenció Primària de Salut Jordi Gol i Gurina (IDIAPJGol) Clinical Research Ethics Committee (22/092-P).

Study participants

Participants were purposively selected from among nurses and physicians in the field. The project was presented at a general management meeting, and subsequently, an email was sent with further information. A meeting was arranged at those primary care centers that agreed to participate, and all professionals were invited to participate. The criteria for homogeneity were nurses and physicians working in the Atenció Primària Metropolitana Sud area. The criteria for heterogeneity included sex, professional profile, and level of clinical experience in the management of people with ACKD. We aimed to include various primary care professionals, including nurses and physicians, working in different capacities related to their experience in managing ACKD. This includes roles such as primary care consultation, chronicity profiles, or case manager nurses.

Data collection

The data were gathered between 1 October 2022 and 31 April 2023 from distinct focus groups of physicians and nurses and from mixed focus groups, aiming to acquire more comprehensive, pertinent, and diverse information relevant to the research query. We initially worked with the professional groups separately to extract maximum information regarding the specific interventions within their daily practice, as well as to identify the specific barriers unique to each profession. This approach aligns with phenomenological principles, wherein the central focus of the study is on the phenomena under examination [ 29 , 30 ]. Furthermore, standardised follow-up is more commonly conducted by nurses, while physicians tend to rely more on clinical practice guidelines. The mixed group aimed for heterogeneity according to discipline but homogeneity in terms of greater expertise in managing people with advanced chronic diseases. It consisted of physicians specialising in chronicity and nurses specialising in case management. These professionals dedicate more time to treating this profile of patients, and here, the aim was to complement experiences and opinions through the exchange of interventions and barriers and facilitators. We used a script outlining thematic areas derived from the theoretical constructs of the TBP to explore attitudes, subjective norms, and perceived behavioural control regarding the management of individuals with ACKD, as well as the implementation of evidence-based guidelines and standardised electronic records (Additional file 1). Narratives (EPO, ILG, VMF, and MJI) were audio-recorded and subsequently transcribed. Field notes were used during and after the interviews. The interviews, conducted either in Catalan or Spanish depending on the interviewee's preferred language at the time, were transcribed in their respective languages and subsequently translated by a certified translation company. The authors subsequently compared these translations to ensure the semantic accuracy of each phrase. The data were anonymised by assigning them a numerical code.

Data analysis

The interview data were analysed using thematic analysis procedures [ 31 ].

Initially, to obtain a condensed view of the information, the raw data were transformed into usable data by breaking down texts and establishing units of semantic meaning. Relevant data pertaining to the research question were systematically coded. Once all the data had been encoded and the entire dataset had been coded, the codes were grouped into potential subthemes. These subthemes were then integrated within the main themes identified in accordance with the TBP [ 20 ]. Subsequently, a review was conducted to assess the coherence of the themes with the coded extracts, ensuring sufficient and relevant data to demonstrate the prevalence of each theme related to the conditioning factors in the approach and use of scientific evidence on ACKD. This process was facilitated by a thematic map, aiding in understanding the relationships between the main themes, subthemes, and codes while applying criteria for internal homogeneity within each theme and external heterogeneity between themes [ 32 ]. Finally, the final themes and subthemes were defined and refined, and the report was prepared for thematic analysis of the data [ 31 ]. The coding and analysis were conducted by two researchers (ILG and EPO), who developed the thematic map, codebook, subtopics, and topics. A third researcher (VMF) was consulted during the analysis process to resolve any discrepancies in data interpretation [ 31 ]. The average interview duration was 55.3 min. The analysis was conducted concurrently with the interviews and continued until thematic saturation. The transcripts were returned to the participants for correction, and no comments were made. All the transcripts were entered into the qualitative analysis software Atlas.ti Web to assist with the data management and analysis. The authors did not employ generative artificial intelligence or AI-assisted technologies in any phase of this research or in its composition. The authors did not employ generative artificial intelligence or AI-assisted technologies in any phase of this research or in its composition.

Characteristics of the participants

Thirty-three primary care professionals (7 primary care nurse case managers, 14 primary care nurses, 6 family physicians, and 6 family physicians with expertise in complex chronicity) were interviewed in a pilot interview and 5 focus groups in four urban areas and one rural area until information saturation was reached. The average age and average years of professional experience were 46.8 and 19.6 years, respectively (Table  1 ). Different codes, subtopics ( n  = 11) and topics ( n  = 4) were obtained (Table  2 ). The topics were experiences in the management of ACKD (topic 1), factors in the professional environment that influence the use of evidence-based action recommendations (topic 2), attitudes toward the use of recommendations (topic 3), and perceived capacities to implement recommendations (topic 4).

Experiences in the management of ACKD

Profile of patients with ackd seen in primary care.

In primary care, the predominant profile of people with ACKD corresponds to elderly individuals with comorbidities. The most frequently mentioned were cardiovascular diseases, diabetes and hypertension. Furthermore, in all the focus groups, the associations between frailty and these comorbidities were highlighted.

“ What I normally see are old, fragile, complex patient s.” G01.2 Primary Care Nurse

Although less common, another profile of people with ACKD was identified—those who were younger and without frailty—who were mainly followed by hospital nephrology and were more disengaged from primary care for this reason.

“These filtration values ( <  30) do not pass through primary care because patients already spend enough time on their disease while on dialysis and have enough time to come for follow-up in primary care.”    G02.8 Case Manager Nurse in Primary Care

A feature repeatedly mentioned is that people most commonly seen in primary care tend to have limited knowledge of their ACKD diagnosis, as opposed to those who require renal replacement therapy.

“In many cases, it may be our own fault for not having trained it well .” G04.3 Primary care nurse.

“They are not aware of advanced kidney disease (…). When they become aware, they make changes, if necessary at that point of the disease, in their lifestyles, diet,… ”  G02.3  Case Manager Nurse in Primary Care.

Masked disease in primary care

In three of the five focus groups, we found stories highlighting that ACKD, both in its diagnosis and in its management in primary care, was masked by other diseases whose follow-up was prioritised over CKD.

“ However, this condition is not considered important for diabetes, hypertension or other (frequent) pathologies. In addition, it should be .” G01.2. Primary care nurse.

Therefore, the first step is to become aware of the disease they present, both professionals and patients and their families.

“ All of us have experienced the disease less, and therefore probably also convey this message less to patients. ” G02.9 Family physician with expertise in chronicity.

“ I also thought until now that the (ACKD patient) went (only) to the hospital. I swear.” G04.6 Primary care nurse.

The presence of comorbidities could play a dual role, acting as both a barrier and a facilitator.

On the one hand, three focus groups indicated that when there were numerous comorbidities, they prioritised other diseases over ACKD, which proved to be an obstacle. On the other hand, at times, it serves as a facilitator, as the disease or its progression is frequently detected during the follow-up of other comorbidities. The need to involve nursing input in the proactive follow-up of this population is met.

“ I think that in general, chronic kidney disease is seen as a consequence of other diseases and rarely occurs as an individual entity. ” G02.9 Family physician with expertise in chronicity.

“ I also believe that on many occasions, with the primary care structure, it is very clear to us that we have to attend to the hypertensive patient, the diabetic patient, the patient such as…and we treat it as such. However, we do not treat (for patients with CKD), we do not perform a blood test, or we do not provide specialised care if it is just kidney failure. It rarely appears in the consultation if you only have kidney failure. It may be difficult to find.”   G04.3. Primary care nurse.

Clinical practices according to professional profile

In relation to the management of ACKD, the most important elements identified included the control of cardiovascular risk factors, regular blood and urine test follow-up, review and adjustment of prescribed medication, management of dietary habits and controls, social support and, in the final stages, decision making to ‘stop doing’, i.e., to reduce medical interventions and prioritise quality of life. However, the implementation barriers discussed throughout the study were also reported.

In terms of the nursing approach, health education predominated over lifestyle modification, suggesting on several occasions the importance of a low-sodium diet and strict water restriction, as well as interventions to measure anthropometric variables, vital signs and medication review (in all nursing focus groups). Caregiver support and intervention in the socioeconomic dimension also appeared, in contrast to the findings for the groups treated by physicians only. In terms of the approach taken by primary care physicians, in all of the focus groups reported, the main focus was on the review of nephrotoxic drugs, follow-up tests and the detection of complications. In contrast, in more specialised chronicity roles (G03.2, G03.5, G02.3, G02.6, and G02.7), such as case managers and chronicity physicians, aspects such as shared decision making, anticipation of possible complications arising from disease progression and 'stop doing' interventions predominated.

“The patient is the one who has to make decisions, right? It is a disease that will progress, and there will come a time when they will have to make important decisions such as dialysis, whether to do it or not, and I think that sometimes it is difficult to reach this point of view, whether they are primary care professionals, specialists, or the patient him/herself  ”  . G02.7 Case Manager Nurse in Primary Care.

Patient contextual factors

The common presence of multiple comorbidities often poses a challenge for professionals, hindering adherence to recommendations regarding medication, diet, and other lifestyle factors. For example, long lists of medicines can trigger adverse effects and poor adherence. In addition, older age, according to the perceptions of professionals, is a barrier to lifestyle change. Another difficulty that was strongly emphasised was the socioeconomic conditions that are undermined by the increased overall frailty of people with ACKD. These findings were evident in all the focus groups.

“ I mean, it is very difficult. When you see lists of medications and see the amount of things they cannot eat… Well, I do not know, it would be difficult for me. ” G06.3 Family physician.

“ They are chronic patients, and they are tired of their illness, so for a while they do it (the change of habits), but then you have to insist because…” G05.3 Primary care nurse.

Factors in the professional environment that influence the use of scientific evidence

Pressure from the care environment.

Limited time was identified as the primary barrier to seeking and implementing the recommended guidelines. Some professionals across four focus groups addressed this challenge by implementing time optimisation strategies and fostering teamwork. Specifically, physicians employed a wider range of strategies regarding clinical guidelines (e.g., consulting with colleagues G01.3 by storing reference guides in folders readily accessible for daily practice G03.5), while nurses concentrated on standardised electronic records (prioritising the disease with the poorest control, G05.8). Both groups observed that collaborative working helped alleviate pressure barriers in the work environment.

Another obstacle to the utilisation of specific CKD systematic records lies in the annual incentives for accessing general electronic records. These incentives encourage all primary care professionals to record other patient clinical variables that are not specific to ACKD. This resulted in family physicians (G01.3, G06.2, G06.3, G06,5) prioritising the recording of those nonspecific ACKD variables within a limited timeframe rather than the typical standardised monitoring variables that should be applied to CKD patients. Consequently, professionals reported recording variables that were not the most crucial and thus failed to deliver the care considered a priority.

“ They look at you; they take (data) pictures of things that are not important. (…) But, instead of focusing on significant matters, something different arises after taking the photo. ” G06.2 Family physician.

Excessive electronic records on a day-to-day basis

In the nursing focus groups (G04, G05, and the nurse case managers from G02), standardised care plans were seen to create surplus documentation when caring for individuals with multiple conditions, as each plan is tailored to address specific needs. This means that the clinical care of the individual requires the implementation of several plans, multiplying the records. This aspect was identified as a barrier to implementation. In fact, nurses who try to implement the care plan together with other plans for other diseases describe the recording situation as complicated, attributed to its terms such as "surviving" (G05.8) or "juggling" (G05.9) , due to the limited time available during the consultation with the patient.

 “ The perception I have when we do things like this is that then it is like a mental breakdown of having to fill it all in. In addition, then you lose a little bit of focus, so if you look at it as something structural, it is fine because it will help me to control it, it will not slip away; I will keep an eye on it. However, the reality is that there are many more things because that is what it is: heart failure, I do not know what, I don't know how many… so I have the feeling that I lose the sense of direction a little bit between all the little things. ” G06.3 Family physician.

 “ Yes, I understand that the objective is that everyone, all patients with advanced kidney disease receive quality care. But if we look at quality care for this, then I think we fall a little short. Obviously, this should be possible in some way, right? But… medicine and nursing are not data. There is data… ” G06.2 Family physician.

Implementation of clinical recommendations: poorly accessible and poorly known CKD clinical practice guidelines

It was often considered that there is more knowledge of other diseases that are more prevalent in primary care with respect to the reference guidelines of the hospital and primary care settings; therefore, they are applied with a certain cohesion between professionals in both settings. However, in relation to CKD and, specifically, ACKD, none of the participants in the study clearly identified the reference guidelines. Although some professionals were aware of some of the recommendations, they doubted that they were the same as those given by the reference nephrology services and therefore doubted whether a unified message was being given from the two areas.

“ There is no clear algorithm that gives you clear instructions. ” G04.4 Primary care nurse. “I don't see any pathway. I don't see anything, I mean, the feeling is that we are here in primary care and we are all out of date, and you are looking for a life with your colleagues because no one from there will come to give you any sessions ” G05.8 Primary Care nurse. “ There are many things that we do have, but kidney disease, as far as I know, no, there is none. ” G01.2 Primary care nurse case manager

As a proposal to improve this aspect, they reported that territorial care processes could contribute to improving and updating practices through recommendations in the guidelines (focus groups G03, G05, G06). This approach would make it easier to work in a more unified way at the territorial level, i.e., in primary and hospital care settings.

“ Yes, I think it is necessary to review and reinforce pathways to work all in the same direction”  G05.2. Primary care nurse.

The lack of updating of care pathways, according to professionals, has contributed to the dilution of guidelines and pathways over time, resulting in a lack of knowledge about them. Integration into the computerised medical records platform was advocated, as had been done in the past for other pathologies. In a primary care context with significant variability in the reasons for consultation and care pressure, they considered that it is necessary to activate digital resources that facilitate access to the best available evidence in a simple way.

“ I think are not so easily accessible” G03.2. Family physician with expertise in chronicity.

Attitudes toward the implementation of the CKD recommendations

Standardised care plans for ckd that provide guidance for practice.

Some participating nurses highlighted that the use of these standardised electronic records in primary care carries controversial implications within the same team. While some nurses perceive them as burdensome and disconnected from day-to-day usefulness (G02.8, G04.6, G06.2), others view them as practical guidelines that establish the foundation for standardised care among professionals who utilise them, aiding in enhancing knowledge about the disease and its management (G01.2, G02.6, G04.5, G05.3, G06.5).

“ Sometimes, it's a tool (standardised plans) that, when I've used it and seen it over time, is fantastic because it provides access to a multitude of links that offer a wealth of information. However, the issue arises when this information often doesn’t have enough time to be conveyed to the patient. (…) There simply isn't enough time to accomplish all of that. But if you have the time, it's remarkable  .”G05.7 Primary Care nurse. “ It would help to learn more about advanced chronic kidney disease ”  G05.3 Primary care nurse.

Unhelpful standardised electronic care plans

There was an attitudinal barrier related to the belief that standardised care plans were not useful for sharing health information among colleagues. The professionals argued for two technical reasons. First, this information tended to be met with resistance from professionals who use and review it (G03,2, G02.8), primarily because of its format within the patient's medical records. It is often described as lacking clarity or personalisation to the patient's specific circumstances (G02,3, G02,7, G02.8).

“ I would say that I am now indignant because I think that the clinical assessment is detracting, because that is precisely what I am not interested in seeing (with this type of language). It is the least interesting for a patient with complex or advanced chronicity, it is the least informative for colleagues, and it also takes up space and time that makes no sense at all.”  G02.8 Primary care nurse case manager.

The second reason they perceived standardised electronic records as being of little use was because, at present, in the shared medical records—accessed electronically from other healthcare settings and providers, such as hospitals—only some clinical follow-up data from primary care is visible, not all, as is the case with electronic records for conditions such as CKD. These are only accessible in the primary care setting and not in other hospital settings (G04,6, G02.4, G02.5, G02.6). Therefore, healthcare professionals opt to use alternative clinical records that are visible in shared medical records, even though they are not standardised electronic records for CKD patients. Knowing that important follow-up data entered into electronic CKD records will not be seen by other hospital colleagues who are involved in the care of these patients, such as nephrologists, leads professionals to choose other types of clinical records. This approach is relevant because, on many occasions, clinical information of interest to both parties is shared.

“ If you enter through the standardised care plan, no one else sees it, that is, we see it here in the centre, but not in the hospital ”  G04.6 Primary care nurse

“ I’m following it but they cannot see the follow-up that we do, it is clear, it is as if it was not followed at all ”  G02.5 Case Manager Nurse in Primary Care.

Capacities to implement evidence-based recommendations

Lack of training to implement the recommendations in practice.

Practitioners reported that the CKD care plan improves safety and guides practice. However, to optimise its use, they underlined the need to implement specific training strategies to enable its correct application. Team sessions on various clinical management topics are recognised as an important element in keeping professionals up to date and cohesive in the management of the population with chronic health conditions. However, in line with the masking of CKD with other diseases, this dynamic is also reflected in primary care team sessions (G02.3, G06.4) and nonexisting face-to-face consultations with nephrology professionals in the hospital setting (G03.2, G03.5), considering that nephrology services are distant from primary care (G02.4, G02.9, G06.3).

“I think that the nephrologist is a specialist far removed from primary care. Others do (face-to-face) consultations, endocrinologists, I don't know, and nephrologists are inaccessible. ”  G02.4 Case Manager Nurse in Primary Care.

Another aspect related to the capacity for a specific approach to this disease is that, thus far, the primary care nurse has not been fully and proactively engaged in the overall follow-up of this patient profile. This lack of involvement does not allow for the teamwork that is essential for jointly addressing ACKD, as indicated in the recommendations.

“ Kidney failure at the nursing level is hardly followed up, if at all ” G02.6 Case Manager Nurse in Primary Care

Shared management and counselling in the follow-up of ACKD patients

A frequently encountered situation identified was the lack of professional meetings with specialists from the referral service, as well as the lack of two-way communication channels with them. This aspect, which was repeatedly mentioned in the focus groups, has been considered an important factor associated with the implementation of the recommendations. The potential to exchange viewpoints and treatments is considered crucial, as it enhances understanding and boosts confidence in their application. Professionals emphasised that collaborative follow-up (G01.2, G03.3), based on the same evidence-backed guidelines, would contribute to enhancing care for this particular group.

“ That would make it much easier? to follow these guidelines, because it is much more natural, it would give more consistency to the person's case management and it would be easier and better for them. ”  G03.3. Family physician with expertise in chronicity.

“ There is a lack of communication between the different levels and between the different systems. ” G05.9 Primary Care Nurse

Virtual consultations have become the standard method for discussing clinical management between primary care providers and hospitals. However, they are one-sided, which hinders the effective exchange of information among professionals in both settings (G06,2, G06.3, G06.4, G03.2, G03.4, G03.5). Professionals advocated for interactions that create opportunities for interdisciplinary and transdisciplinary care (G01.2, G03.3, G04.2, G04.3). While primary care providers seek guidance from the nephrology department, professionals also highlight that primary care providers possess a deeper understanding of the patient's sociofamilial context. Hence, deferred teleconsultation does not entirely resolve this issue, as collaborative work between both services is necessary. Participants reported that this collaboration should consider all perspectives to enable genuine shared decision-making.

“ The advantage we have is that you go to the patient's home and see their environment, which is very different from when the patient goes to the nephrology department with dialysis; you don't see the day-to-day reality and we can see that. ” G03.2 Family physician with expertise in chronicity.

In this qualitative study, we specifically identified attitudinal, environmental, and behavioural control elements as outlined in the Theory of Planned Behaviour concerning ACKD management within a population of primary care nurses and physicians.

Although qualitative studies on practitioners' views on the management of ACKD exist [ 12 ], to our knowledge, this is the first study to use the conceptual components of this theory to study factors associated with practitioners' implementation of practice-based management of ACKD. To contextualise the elements of the theory studied, we investigated the characteristics of the people with ACKD most frequently seen in primary care from the perspective of professionals. First, the usual profile is that of an elderly person with global frailty and comorbidities. These findings are supported by the literature, in which CKD has strong links with chronic diseases [ 2 , 33 ], and their accumulation occurs with age and leads to frailty [ 34 ]. In the present study, the context of comorbidity and its consequences was recognised as a barrier to the application of evidence-based clinical recommendations. Furthermore, Squires et al. [ 35 ] In a 2019 study on contextual attributes for practitioners' use of evidence, patient context was one of the most frequently cited attributes more than 90% of the time [ 35 ]. Indeed, Kim et al. [ 36 ] reported that uncertainty and social support (which were also identified in our study population) were important factors associated with adherence in CKD patients [ 36 ]. Another barrier identified in the present study was educational barriers in terms of patients’ lack of knowledge about their disease and even lack of disease awareness. This finding has also been echoed in other studies, which estimate that 90% of kidney patients are unaware of their diagnosis [ 15 ]. In our study, professionals acknowledged that they do not play a prominent role in informing patients about this pathology, a situation that has also been observed in other primary care settings related to CKD [ 37 ]. Indeed, a systematic review on barriers to and facilitators of CKD treatment in primary care highlighted a deficiency in resources for patient education [ 38 ]. With regard to the approach to treating ACKD in primary care, another relevant finding of the study was that this disease is neglected in relation to other active pathologies, as the interventions recommended in the clinical practice guidelines were not given the same weight. The causes were diverse and included issues such as time constraints, limited accessibility, lack of familiarity with reference clinical guidelines, and inadequate professional training. In this regard, the results were consistent with multiple studies that have shown CKD to be a significant clinical problem with lower priority [ 38 ]. Additionally, a worldwide study revealed that professional barriers, such as low knowledge, negative attitudes, and limited professional awareness, were prevalent in more than 80% of the surveyed countries [ 39 ]. One possible explanation for this could be the examination of the perspectives of family physicians involved in CKD care, highlighting issues such as a lack of confidence and limited experience in follow-up care, among other factors [ 12 ].

Although several authors have investigated the approach and limitations of family physicians in primary care for patients with ACKD, few studies have explored this aspect in nurses. In our study, most nurses expressed the belief that ACKD was addressed only in the hospital and that it was not proactively and comprehensively followed up in primary care for this reason. This indicated that nurses have not fully developed their contribution to the care of people with ACKD in primary care and that the same standards applied in other pathologies are not used. The work of primary care nurses in the care of people with ACKD requires the systematisation of evidence-based care, as indicated in the healthcare context in which this study was carried out [ 40 ]. In addition, our study revealed the need to involve nurses, especially since patients were identified as having little knowledge of self-management of ACKD, which implies significant educational needs. To promote self-care, primary care nurses, as experts in health education, need to include people with ACKD in global and proactive follow-up, as indicated by multidisciplinary models of care [ 41 ]. One study highlighted the need to improve the accessibility of educational interventions for patients with ACKD among nephrology nurses [ 13 ]. It is therefore reasonable that nurses in this primary care setting should be able to develop educational interventions to optimise patient self-care. Enhancing the role of nurses within the multidisciplinary care model for people with ACKD would contribute to slowing disease progression, decreasing mortality and reducing the annual costs of the disease [ 41 ].

To investigate the subjective norms that influence the application of ACKD management guidelines, we examined factors in the professional environment in a universal health primary care setting. The pressure of care was identified at two levels: limited time and the excessive burden of electronic records. Historically, time constraints in patient consultations have been recognised as barriers to the implementation of evidence-based practices [ 16 ]. However, it is important to consider the excessive electronic record-keeping demands placed on professionals. In the context of our study, implementing standardised plans and evidence-based clinical recommendations was not an easy task, as the participants assured that it requires updated knowledge and skills for their integration into everyday life [ 16 ]. This scenario has prompted a sense of resistance towards electronic records, attributed to the sheer volume that professionals are required to manage when addressing comprehensive patient care, encompassing all their comorbidities. In a systematic review examining barriers to and facilitators of e-health implementation, while mismatch with daily clinical practice was acknowledged, this particular issue was not explicitly pinpointed [ 42 ]. This could be due to the desire to integrate all dimensions of health and the profile of patients in primary care. Another subjective standard identified was the accessibility of clinical practice guidelines in the work environment. In our study, this issue was evident in all the focus groups, where reference Clinical Practice Guidelines for CKD were reported to be unfamiliar to practitioners and perceived as inaccessible. Although accessibility has improved dramatically through internet search engines, keeping up to date with the literature, they reported that this improvement was difficult due to the wide variety of studies and information available. Selecting the best evidence and in cohesion with the rest of the providers requires efforts on the part of health care companies to implement these strategies in the context and organisation [ 43 ].

In exploring further attitudes toward the application of evidence-based practices, subtopics related to standardised electronic CKD plans emerged. On the one hand, and in line with other studies, these findings can guide practice and contribute to professional knowledge of ACKD. This is because standardised electronic records have the potential to enhance the quality and coordination of care for individuals with multiple chronic diseases [ 44 ]. They incorporate recommendations for patient follow-up, with technological support being identified as the most common facilitator [ 38 ]. On the other hand, a barrier to their use was that they were considered not very useful for recording and interprofessional communication. This remains a major barrier to the management of CKD [ 38 ]. Some research identifies the quality of electronic records as a challenge, and proposals focus on improving the functionality of the software and improving multidisciplinary cooperation [ 45 ]. Similarly, in our study, standardised records were also seen as hindering communication and diminishing the recognition of the nurse's role, as they are primarily responsible for implementing this type of documentation within our study’s context.

In exploring the elements of perceived behavioural control specifically, two interrelated subtopics emerged. On the one hand, training to implement the recommendations is lacking. 

This can be explained by three related factors: dissatisfaction with the guidelines to be followed, perceived lack of knowledge, and a lack of awareness of support resources [ 38 ]. The present study revealed that the implementation of standardised care plans, in addition to overcoming the aforementioned environmental barriers, must be complemented by specific training strategies within the primary care team. In addition, consulting with nephrology providers could improve this approach to incorporate the recommendations into practice. Finally, aligning with findings from other studies, enhancing the collaborative relationship between primary care and nephrology professionals was suggested as a factor to increase perceived behavioural control [ 12 , 13 , 38 , 46 ]. In the context of our study, professionals perceived the necessity of establishing bidirectional communication channels to enable the shared follow-up of people with ACKD.

Limitations

This study has several limitations. First, professionals who agreed to participate were recruited through the primary care centres. Afterwards, nurses and physicians from the participating centres were summoned and invited to attend on an agreed-upon day and time. To reach a wider audience, the focus groups were conducted in the workplace. However, it is possible that we may have gathered results on the attitudes, subjective norms, and behavioural control of professionals most involved in the care of individuals with this condition, potentially overlooking the barriers faced by those less familiar with the disease. This was an aspect we could not control in the research field. Additionally, another aspect beyond our control was the age of the participants. The studied sample had an average age of 46 years, meaning that we may have omitted elements of the TPB related to younger ages, for instance, concerning the implementation of standardised electronic records. Second, we sought to analyse the three main elements described in the TPB, which are the conditioning factors for following evidence-based recommendations. When guiding research based on this theory, we have not explored other elements that could influence it, such as moral norms, an extension of the TPB, which should be considered to fully understand the psychological factors associated with evidence-based approaches to ACKD. The moral norm is understood as a person's perception of the appropriateness of certain behaviours [ 24 ]. The authors of the TPB argue that moral a reliable predictor of behaviour in situations where strong social pressures exist, as in the case of the present study. Therefore, the fact that some beliefs and experiences analysed in this study are linked to social pressure suggests that the values and beliefs studied alongside the moral norm could play a significant role in analysing the use of evidence-based practice. In essence, further investigation is needed to comprehend why key guidelines for treating ERCA have not been implemented, even when they are known or if the environment supports them positively. Perhaps exploring this aspect through moral standards is necessary. Additionally, by examining the three elements of the TPB, we may have overlooked other facets related to the application of the TBP or the context in which it is studied, as indicated by Squires et al. [ 35 ] in a study on different contextual attributes that influence the application of evidence-based practice. Finally, our results are based on self-reported practices, and we do not know to what extent self-reported practices and other contextual factors reflect reality and how patients perceive this care. In future research, it would be useful to analyse the influence of the abovementioned aspects that may help to gain a deeper understanding of the factors behind evidence-based practices in the management of people with ACKD.

The clinical, social, and healthcare context of CKD patients presented challenges in implementing an evidence-based team approach. This approach has impacted the application of clinical practice guidelines and standardised care plans. Several psychological elements identified through the TBP make it challenging to adequately implement an evidence-based approach for people with ACKD. Attitudes have been recognised as factors that modulate the use of standardised electronic records. Professionals suggested enhancing information technology systems and effectively integrating them into shared medical records. However, subjective norms (influences from the professional environment) and perceived behavioural control (perception of capabilities) acted as barriers to the appropriate application of clinical practice guidelines and standardised records. Professionals advocated overcoming these barriers through team clinical sessions, collaborative teamwork involving nurses in active ACKD monitoring, and cooperation with referring nephrology services.

This study aimed to specifically understand the attitudes, subjective norms, and behavioural control underlying the use of the evidence-based approach for people with ACKD in primary care. The TBP aided in identifying the psychological elements underlying an evidence-based approach for individuals with ACKD. On the one hand, standardised electronic ACKD records face significant limitations in terms of attitudes, subjective norms, and behavioural monitoring. In the short term, to address this issue, strategies should focus on enhancing positive attitudes, which guide professional practice, and counteracting negative attitudes, thus improving their utility to enhance work and the visibility of interventions. In the long term, improving subjective norms would involve reducing the overall demand for records in primary care, while enhancing perceived behavioural control would involve promoting the use and sharing of records among all team members.

On the other hand, the implementation of CKD clinical practice guidelines identified barriers related to subjective norms and behavioural control. In the short term, strategies to address this issue should aim to integrate these guidelines into workplace information systems so that they are readily accessible and can be shared by colleagues in team sessions, enabling continuous updating. This strategy lays the groundwork for improving perceived behavioural control, with longer-term strategies including the development of new communication channels for advice and shared management of patients between primary care and nephrology professionals.

Availability of data and materials

The datasets used, generated or analyzed during this study are available from corresponding author on reasonable request.

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Acknowledgements

Thanks to the generosity and personal effort of all the nurses and family physicians from the Primary Care Centers Montclar, El Castell, Unitat d'Atenció a la Cronicitat i Complexitat del Servei d'Atenció Primària Alt Penedès Garraf i Baix Llobregat Nord, i Baix Llobregat Centre, who contributed their professional experience by participating in the study.

This study is part of a broader research project funded by the Department of Health of the Government of Catalonia through the Strategic Plan for Health Research and Innovation (PERIS-5th call SLT021), with file number SLT021/21/000031. The funding from this project supported the analysis and compilation of qualitative data in this study.

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Betlem Salvador, Iris Lumillo, Elena Pintado, Pilar Sancho, and Carolina Alves participated in project design and literature review. Iris Lumillo, Elena Pintado, Victoria Morin, and Maricel Julvé participated in pre-interviews, expert consultation, recruitment, informed consent, interviews, and data collation. Iris Lumillo, Llúcia Benito, Betlem Salvador, Victoria Morin, and Elena Pintado participated in the comprehensive manuscript review and preparation.

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This study was performed in accordance with the principles of the Declaration of Helsinki. The study was approved by the Ethics Committees at the primary care and hospital reference centers:

Comitè Ètic d’Investigació amb medicaments (CEIm) of the IDIAP Jordi Gol (22/092-P).

Comitè d’Ètica de la Investigació de l’Hospital Universitari de Bellvitge (PR292/22).

All participants were informed of the research objectives, interview topics, and data usage, explained the confidentiality criteria, were anonymous, and were right to withdraw from the study. Each participant was provided with an informed consent form, giving them the choice to participate. By signing this form, they voluntarily confirmed their participation and agreed to the anonymous use of their data for communications and scientific publications. Participants were informed of their rights regarding access, rectification, erasure, objection, processing restrictions, and data portability. These rights could be exercised by contacting the study's principal investigator. Participants also had the right to lodge a complaint with the Catalan Data Protection Authority if they felt that their rights were violated by any actions of the Department of Health. The study personnel processed and utilised the data while maintaining strict confidentiality, adhering to the guidelines outlined in Organic Law 3/2018, dated December 5, regarding personal data protection and digital rights guarantees, and the subsequent Regulation (EU) 2016/679 General Data Protection Regulation.

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Pintado-Outumuro, E., Morin-Fraile, V., Salvador-González, B. et al. Exploring the factors influencing evidence-based approaches to advanced chronic kidney disease: a qualitative study involving nurses and physicians. BMC Prim. Care 25 , 177 (2024). https://doi.org/10.1186/s12875-024-02418-0

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• Kidney Int Suppl (2011)
• v.10(1); 2020 Mar

Global case studies for chronic kidney disease/end-stage kidney disease care

Chih-wei yang.

1 Kidney Research Center, Department of Nephrology, Chang Gung Memorial Hospital, Chang Gung University College of Medicine, Taoyuan, Taiwan

David C.H. Harris

2 Centre for Transplantation and Renal Research, Westmead Institute for Medical Research, University of Sydney, Sydney, New South Wales, Australia

Valerie A. Luyckx

3 Institute of Biomedical Ethics and the History of Medicine, University of Zurich, Zurich, Switzerland

4 Renal Division, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts, USA

Masaomi Nangaku

5 Division of Nephrology, The University of Tokyo School of Medicine, Hongo, Japan

Fan Fan Hou

6 State Key Laboratory of Organ Failure Research, National Clinical Research Center for Kidney Disease, Division of Nephrology, Nanfang Hospital, Southern Medical University, Guangzhou, China

Guillermo Garcia Garcia

7 Servicio de Nefrologia, Hospital Civil de Guadalajara Fray Antonio Alcalde, University of Guadalajara Health Sciences Center, Hospital 278, Guadalajara, Jalisco, Mexico

Hasan Abu-Aisha

8 Almughtaribeen University, Khartoum, Sudan

Abdou Niang

9 Department of Nephrology, Dalal Jamm Hospital, Cheikh Anta Diop University Teaching Hospital, Dakar, Senegal

10 Dialysis Unit, CASMU-IAMPP, Montevideo, Uruguay

Sakarn Bunnag

11 Division of Nephrology, Department of Internal Medicine, Rajavithi Hospital, Bangkok, Thailand

Somchai Eiam-Ong

12 Department of Medicine, Chulalongkorn Hospital, Bangkok, Thailand

Kriang Tungsanga

13 Division of Nephrology, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand

14 Bhumirajanagarindra Kidney Institute, Bangkok, Thailand

Marie Richards

15 SEHA Dialysis Services, Abu Dhabi, United Arab Emirates

Nick Richards

Bak leong goh.

16 Department of Nephrology and Clinical Research Centre, Hospital Serdang, Jalan Puchong, Kajang, Selangor, Malaysia

Gavin Dreyer

17 Department of Nephrology, Barts Health NHS Trust, London, UK

18 Centre for Nephrology, University College London, London, UK

Henry Mzingajira

19 Malawi Ministry of Health, Queen Elizabeth Central Hospital, Blantyre, Malawi

Ahmed Twahir

20 Parklands Kidney Centre, Nairobi, Kenya

21 Department of Medicine, The Aga Khan University Hospital, Nairobi, Kenya

Mignon I. McCulloch

22 Paediatric Intensive and Critical Unit, Red Cross War Memorial Children’s Hospital, University of Cape Town, Cape Town, South Africa

23 Division of Nephrology, College of Medicine, Seoul National University, Seoul, Korea

Charlotte Osafo

24 School of Medicine and Dentistry, College of Health Sciences, University of Ghana, Legon, Accra, Ghana

Hsiang-Hao Hsu

Lianne barnieh.

25 Department of Medicine, University of Calgary, Calgary, Alberta, Canada

26 Pan American Health Organization/World Health Organization’s Coordinating Centre in Prevention and Control of Chronic Kidney Disease, University of Calgary, Calgary, Alberta, Canada

Jo-Ann Donner

27 International Society of Nephrology, Brussels, Belgium

Marcello Tonelli

The prevalence of chronic kidney disease and its risk factors is increasing worldwide, and the rapid rise in global need for end-stage kidney disease care is a major challenge for health systems, particularly in low- and middle-income countries. Countries are responding to the challenge of end-stage kidney disease in different ways, with variable provision of the components of a kidney care strategy, including effective prevention, detection, conservative care, kidney transplantation, and an appropriate mix of dialysis modalities. This collection of case studies is from 15 countries from around the world and offers valuable learning examples from a variety of contexts. The variability in approaches may be explained by country differences in burden of disease, available human or financial resources, income status, and cost structures. In addition, cultural considerations, political context, and competing interests from other stakeholders must be considered. Although the approaches taken have often varied substantially, a common theme is the potential benefits of multistakeholder engagement aimed at improving the availability and scope of integrated kidney care.

The prevalence of chronic kidney disease (CKD) and its risk factors is increasing worldwide, and there is a rapid rise in global need for the treatment of end-stage kidney disease (ESKD). The global nephrology community recognizes the need for a plan to address the growing incidence of CKD and a cohesive approach for CKD/ESKD integrated care. 1 This provides a major challenge for health systems, particularly in lower-middle-income countries (LMICs). Because of the growing demand for expensive kidney replacement therapy (KRT; dialysis or kidney transplantation) and in light of the limited resources, ESKD care must be prioritized against the prevention and treatment of CKD, acute kidney injury (AKI), and other noncommunicable diseases (NCDs).

Countries are responding to the challenge of ESKD in different ways, with variable provision of the components of a kidney care strategy (effective prevention, detection, conservative care, kidney transplantation, and an appropriate mix of dialysis modalities) and World Bank classification of economic status. 2 A key goal stated in the article by Harris et al. 1 was to identify a representative selection of country-based case studies showing different levels of development in managing CKD/ESKD care, which offers valuable learning examples. This article illustrates the different approaches that 15 countries have taken toward integrated kidney care ( Table 1 ). Specific areas of approach, in distinct contexts, provide unique experience in CKD, dialysis, and transplantation for ESKD care that are appropriate for each country. Variability in approaches may be explained by country differences in burden of disease, available human or financial resources, and cost structures. In addition, cultural considerations, political context, and competing interests from other stakeholders are confounding factors. This created value to appreciate the similarities and differences of approaches among the unique pathways obtained from each country’s cases.

Table 1

Summary of the CKD/ESKD care study cases

CKD, chronic kidney disease; ESKD, end-stage kidney disease; KRT, kidney replacement therapy; PD, peritoneal dialysis.

Finally, the current approach to kidney disease in many countries is neither sufficient nor sustainable. Thus, this series of case studies demands the urgent attention of governments and policymakers in each country to achieve better integrated CKD/ESKD care.

Integrated CKD/ESKD Care Cases

Taiwan (high-income country): evolution of comprehensive integrated ckd/eskd care.

High prevalent rates of CKD have continued in Taiwan and are reported to be 6.9% for CKD stage 3 to 5, 9.83% for clinically recognized CKD, and 11.9% for CKD stage 1 to 5. However, overall awareness of CKD is low. 3 The major underlying kidney diseases contributing to ESKD are diabetes mellitus (43.2%), chronic glomerulonephritis (25.1%), hypertension (8.3%), and chronic interstitial nephritis (2.8%). 4 The national kidney care program was initiated in response to high rates and has been successfully implemented across Taiwan, resulting in improvements in outcomes for patients along with sustainable cost reductions for the health care system. The pathway and evolution of the CKD/ESKD program in Taiwan may serve as a template in countries where CKD/ESKD is an emerging health care burden ( Table 2 and Appendix 1 ).

Table 2

Evolutionary pathway and road map of CKD/ESKD integrated care in Taiwan

CKD, chronic kidney disease; ESKD, end-stage kidney disease.

To monitor the incidence and burden of ESKD, a national dialysis registry was initiated in 1987 by the Taiwan Society of Nephrology. After this, the Taiwan Society of Nephrology proposed to the Department of Health to make CKD prevention and care a major public health priority. Subsequently, an integrated CKD care program was initiated to promote the screening of high-risk populations (according to the risk factor analysis of epidemiology studies), patient education, and multidisciplinary team care. The CKD care program started in major hospitals in the first phase, then extended to 90 institutes in 2009, and finally rolled out to clinics of general practitioners in 2011. To encourage enrollment in the CKD care program, the Bureau of National Health Insurance reimbursed comprehensive pre-ESKD care for patients with CKD stage 3b to 5 since 2007 and has extended coverage to CKD stage 1 to 3a (early CKD) in 2011. 5 , 6 , 7

These efforts to combat CKD in Taiwan involve collaboration among government, academia and their respective societies, and nongovernmental organizations (NGOs) to enable a multidisciplinary approach that targets not just CKD but also upstream drivers such as diabetes, hypertension, and hyperlipidemia.

Since November 2003, widely used nephrotoxic Chinese herbs containing aristolochic acid were prohibited through public health legislation. This important step also contributed to CKD/ESKD prevention in Taiwan.

Dedicated nephrologists are key to the success of the program, as this group is crucial for performing roles ranging from CKD screening, education, and treatment to involvement and negotiation of public health policy. The CKD committee within the Taiwan Society of Nephrology was the core for the promotion of CKD prevention activities in collaboration with the government—including the Taiwan Kidney Day campaign, which started in 2005.

Strategies for CKD/ESKD care

The strategy and road map for CKD/ESKD care in Taiwan include the following:

• • extending the target population from severe CKD to early stages of CKD as well as commencing kidney health promotion in the general population;
• • integration of CKD as a target of pay-for-performance health care improvement projects, along with diabetes and cardiovascular disease;
• • implementation of early detection and surveillance via national annual physical checkup data for early CKD;
• • early referral to proper care clinics/hospitals;
• • promoting health literacy to the general public; and
• • increased attention to those at highest risk: elderly, multiple diseases, polypharmacy, and so on.

Other factors that have affected the incidence and prevalence of ESKD in Taiwan include universal health coverage (UHC) along with collaboration among government, academia, and NGOs with nephrology societies. Further efforts will be on the prevention and reduction of AKI, outcome monitoring, the promotion of CKD/ESKD shared decision-making, and kidney conservative care. Finally, sustainable quality care of patients with ESKD receiving KRT should be maintained as the ultimate goal.

Outcome measures include the stabilization of the incidence of ESKD in those younger than 75 years, along with lower mortality, better quality of care, less medical costs, better quality of life, and slower rate of progression in patients as demonstrated by findings from the pre-ESKD and early CKD integrated care program 5 , 6 , 7 and diabetes care program. 8 Recent progress of ESKD care has evolved to include more shared decision-making within advance care planning to enable patients and families to choose from various supportive or conservative care options (KRT and withholding/withdrawal of dialysis, where appropriate). The era of CKD care has in parallel progressed to include multidisciplinary care alongside cardiac-kidney-diabetes care with involvement from cardiologists, nephrologists, and endocrinologists. Together these specialists evaluate and educate through dietary management, medical treatment, and surgical intervention, with the goal of reducing mortality and complications in patients with CKD/ESKD. A new concept of personalized care for patients with multimorbidities on dialysis was initiated to treat patients with evidence-based medicine according to the recommended guidelines while also adjusting and modifying for more personalized therapy. This approach has resulted in the stabilization of diabetes mellitus as a cause of ESKD in Taiwan and has also reduced the use of analgesics in patients with ESKD in the year before the initiation of dialysis. 9 The involvement of vascular surgeons in the care of patients on dialysis has also resulted in a reduction of vascular access reconstruction rates. The overall 5-year survival rate of patients on dialysis is currently ∼55.2%, which lies between the rates observed in Japan and Europe. Although the rate of transplantation has been low in Taiwan, the recent promotion of living-related kidney transplantation has increased.

Japan (high-income country): a mature integrated CKD/ESKD care system

Strategies and action plans for kidney disease have been discussed and implemented in collaboration with national and local governments, academic societies, nonprofit organizations, and patient groups in Japan.

Strategies for kidney disease in Japan have focused on early diagnosis of kidney disease by health checkups conducted in schools or workplaces, improvement in CKD care, and dialysis therapy. Dialysis therapy has been covered by health insurance since 1967, and patients requiring maintenance dialysis treatment have been exempted from medical expenses since 1972. Kidney transplantation has been covered by health insurance since 1978, and the Organ Transplant Law of Japan was legislated in 1997. The Ministry of Health, Labour and Welfare promotes various areas of research, such as the kidney failure research team (founded in 1989) and the medical care of chronic kidney failure (published guidelines for dialysis initiation in 1991).

Following the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) Clinical Practice Guidelines for Chronic Kidney Disease: Evaluation, Classification, and Stratification of Risk, a CKD initiative subcommittee was launched in the Japanese Society of Nephrology (JSN) in 2004. 10 To raise awareness of CKD and its complications to society and promote its measures on a national scale, the Japan Association of Chronic Kidney Disease Initiative was founded by JSN in association with the Japanese Society for Dialysis Therapy and the Japanese Society for Pediatric Nephrology in 2006. Since 2007, Kidney Disease Measures Study Meetings, with participation from physicians, nurses, public health specialists, local government staff, and representatives of kidney disease patient groups, were held by the Ministry of Health, Labour and Welfare. These meetings resulted in the formation of the national action plan of CKD strategies in 2008: Future Kidney Disease Measures to Be Achieved. The aim of the strategies is to slow progression of kidney dysfunction, prevent the need for KRT, decrease the number of patients with incipient kidney failure, and reduce cardiovascular complications from CKD. Specifically, this action plan called for raising awareness and disseminating knowledge, a medical cooperation system, improvement in medical treatment standards, development of human resources, and promotion of research. The Ministry of Health, Labour and Welfare is currently revising the national action plan for CKD through the second Kidney Disease Measures Study Meeting, discussing a new national action plan to reduce the number of patients on incident dialysis below 35,000 per year by 2028.

Japanese scientific societies, including JSN, Japanese Society for Dialysis Therapy, and Japan Medical Association, developed various guidelines for referral and care of patients with kidney disease between general practitioners and nephrologists.

In 2013, the Ministry of Health, Labour and Welfare developed a formal document targeting CKD within the national health promotion agenda (Basic Direction for Comprehensive Implementation of National Health Promotion). This document included numerical targets to reduce the number of patients on incident dialysis due to diabetic kidney disease by 2022.

Since Japan instituted UHC in 1961, all citizens are covered by some kind of health insurance. The Japan Revitalization Strategy 2013, a growth strategy announced by the Japanese government extending the nation’s “healthy life expectancy,” was set as one of the themes. 11 Programs to develop a new system of preventive care and health management will be promoted through the requirement of all health insurance societies to analyze data such as health insurance claims. This project program called Data Health Plan will use health data to maintain and improve health conditions of its subscribers, including reduction in the incidence of dialysis. Concrete plans are needed to prevent the onset and worsening of CKD from lifestyle-related disease, such as diabetes or hypertension, identified in specific medical checkups ( Figure 1 ) 12 instituted in 2008. These specific medical checkups are mandated by individual health insurance companies according to the guidelines that outline appropriate laboratory tests to be included, standard inquiries, and the selection and stratification of individuals who require further health guidance. JSN is continuing to emphasize collaboration with other domestic and international societies and regulatory agencies. JSN also achieved its goal of collaborating with the International Society of Nephrology (ISN) and the Japanese Diabetes Society. 13

Relationship between the basic concept of Data Health Plan and chronic kidney disease (CKD), Japan. Reproduced with permission from [Proposal to achieve a decline in the number of dialysis initiations due to lifestyle related diseases—early detection and prevention of onset and progression of CKD]. Nihon Jinzo Gakkai Shi. 2016;58:429–475 [in Japanese]. 12 Copyright © 2016 Japanese Society of Nephrology.

The number of kidney transplantation procedures has increased from 749 in 2000 to 1598 in 2011 and remains constant in 2016 with 1648 total transplants (of note, 1471 from living donors, 61 from donors after cardiac death, and 16 from donors after neurological death). As a proportion of the general population, these rates are low compared to other high-income countries. Standardized incidence ratios of dialysis have significantly decreased since 2008 in Japan ( Figure 2 ). 14 However, the total number of patients on incident dialysis was projected to increase from 36,797 in 2015 to 40,360 in 2025 because of the aging population.

Incidence rates of dialysis by sex and age group in Japan, 2005–2015. Reproduced with permission from Wakasugi M, Narita I. Evaluating the impact of CKD initiatives on the incidence of dialysis in Japan. Jpn J Nephrol. 2018;60:41–49. 14 Copyright © 2018 Japanese Society of Nephrology and the Japanese Journal of Nephrology.

China (upper-middle-income country): prevention and treatment of ESKD

China is the largest LMIC and is home to 20% of the world’s population. CKD is common in China and is now the fastest growing cause of death. 15 The government’s current NCD policy, along with major national medical research grants, focuses predominantly on 5 diseases—cardiovascular disease, cancer, diabetes, chronic respiratory disease, and mental illness—notably excluding CKD. There is no national program for the prevention and treatment of CKD or chronic dialysis in China, though Chinese nephrologists have made great efforts to reduce the prevalence of ESKD and improve outcomes in this population, particularly during the last decade.

Understanding CKD and ESKD burden

CKD is a rapidly growing health burden and is a huge health care challenge in China. Epidemiological studies show that the prevalence of CKD in Chinese adults is 10.8%, 15 representing a population of 120 million patients. As of 2017, there were ∼1 million patients with ESKD in China, with only 52% of them having access to KRT. 16 Based on the current average treatment cost, the annual health care expenditure on dialysis in China is ∼US$50 billion.

A recent study, the China Renal Biopsy Series, analyzed 71,151 patients who had a kidney biopsy at 1 of 938 hospitals in 282 cities across China from 2004 to 2014. 17 This analysis found that IgA nephropathy was the most common glomerular disease with a standardized frequency of 28% and the leading cause of progressive CKD in all age groups. Furthermore, the risk of membranous nephropathy has increased by 13% annually during the last decade. The latter could be associated with the increased level of air pollution with particulate matter <2.5 μm in diameter, a health problem faced by many developing countries.

With the rapid growth of the economy and changes in lifestyle, the prevalence of diabetes mellitus is significantly increasing in China. 18 This increase has changed the pattern of CKD in China. Since 2011, the percentage of CKD due to diabetes has exceeded that of glomerulonephritis-induced CKD in hospitalized patients. 19

AKI is an important driver of CKD, and in China, the incidence of AKI is 11.6% in hospitalized adults 20 and 19.6% in children, 21 but the detection rate is only 0.99% in hospitalized patients. 22 In addition to other known risk factors, nephrotoxic herbs are a potential risk factor for AKI in Chinese adults.

Developing population-based prevention approaches for CKD/ESKD according to the risk factor in the Chinese population

Epidemiological studies have shown that folic acid deficiency is prevalent in Chinese hypertensive populations, particularly in rural areas, and is associated with the risk of development of CKD. 23 A recent large-scale, multicenter, randomized controlled trial conducted in 20 rural communities in China evaluated the efficacy of folic acid supplementation in the prevention of kidney function loss in a hypertensive population without previous cardiovascular disease. 24 Compared to treatment with enalapril alone, the addition of low-dose folic acid significantly reduced the risk of kidney function decline. In patients with CKD at study enrollment, folate supplementation reduced the risk of CKD progression by 56%. Folic acid therapy was also found to reduce the risk of a first stroke 25 and new-onset albuminuria in patients with diabetes. 26 Because folate deficiency has been reported in other developing countries, 27 supplementation of folic acid would be considered a kidney-protective approach for hypertensive populations in these regions.

Developing intervention approaches for delaying progression of CKD in China

Once CKD progresses to ESKD, the risk of death and medical costs increase exponentially. Delaying progression of CKD toward ESKD is an important strategy for reducing the burden of ESKD, particularly in LMIC with limited medical resources. The efficacy of renoprotection by angiotensin-converting enzyme inhibitors and angiotensin receptor blockers in patients with CKD has been demonstrated in randomized controlled trials. 28 , 29 Angiotensin-converting enzyme inhibitors can even be administered in patients with CKD stage 4 and delays the onset of ESKD from 3.5 to 7 years. 30 Uptitration of angiotensin-converting enzyme inhibitor or angiotensin receptor blocker dosages against albuminuria confers further benefit on kidney outcomes in patients with nondiabetic CKD and kidney insufficiency. 31 Given the ∼80,000 patients initiating dialysis every year in China, the uptake of these therapies could save US$120 million annually by delaying dialysis by 1 year for each patient.

Promoting home-based KRT in China

The number of patients on peritoneal dialysis (PD) in China rose from 37,942 in 2012 to 55,373 in 2014. 32 China also has the largest variation in PD uptake among regions, ranging from 14% in mainland China to 73% in Hong Kong. 33 The PD-First policy implemented by Hong Kong health authority may contribute to the higher rate of PD uptake. PD has been recommended as a preferred KRT because of its lower cost, reduced requirement for technical support, and less need for trained medical staff. Increasing access to PD could help increase access to KRT for patients with ESKD, particularly in LMIC.

There are still challenges in delivering PD to patients with ESKD living in rural areas with less access to medical care and dialysis. The Flying Angel program is a model developed by a partnership between the Chinese government, medical centers, and the PD industry to overcome the barriers of promoting PD in rural China. 34 This program develops collaboration between central hospitals and community clinics, provides PD training for community medical practitioners, and has a delivery system for PD fluid and materials. This program has increased access to KRT for rural patients with ESKD. 34

The optimal management of home-based PD is critical for reducing the risk of failure and improving outcomes. By implementing a telephone hotline and mobile phone applications, the collaboration between central hospitals and community clinics is strengthened further, facilitating communication between physicians and patients on PD. Home-based management systems, which include mobile phone applications, also provide lifestyle modification guidance for patients and collects information on treatment response from patients. This model of care increases the compliance of patients on PD and decreases the cost associated with hospital and physician visits.

Mexico (upper-middle-income country): moving toward universal access of CKD/ESKD care

Mexico’s health system does not offer UHC for patients with kidney disease. Social security benefits, including universal access to dialysis and kidney transplantation, are available to individuals employed by the private sector or by the government. However, more than half of the population does not have access to social security benefits and cannot afford private health care services. Access to dialysis and kidney transplantation for this population is limited or nonexistent. 35

To reduce health disparities, a constitutional reform was introduced in 1983, recognizing the right of Mexicans to access health insurance. 36 In 1984, legislation on organ and tissue donation and transplantation was passed by the Mexican congress, including the setup of the National Transplantation Registry, to coordinate and facilitate organ procurement and transplantation. In the 1990s, a network of state transplant coordinators and associated organizations were organized throughout the country, as well as a central coordinating center, the National Transplant Center (CENATRA in Spanish). 37

In 2000, a workshop was convened by the Ministry of Health (MOH) to organize a national dialysis registry, with the participation of representatives of all 32 Mexican state health secretariats; members of the Mexican Society of Nephrology, the Mexican Institute for Nephrology Research, the Mexican Board of Nephrology, and Jalisco Dialysis and Transplant Registry; the directors of the Canadian Organ Replacement Registry and the United States Renal Data System. After this, an ad hoc steering committee began a series of meetings at the MOH’s National Directorate of Epidemiology to set up the registry 38 and a number of actions for the prevention and control of CKD were included in Mexico’s National Health Plan 2001–2006. 39 Among them was the implementation of early screening and treatment of CKD along with a national dialysis registry.

In 2003, a structural reform of the Mexican health system increased financial protection of its citizens by offering publicly subsidized health insurance to more than half of the population not covered by social security. The center of the reform was the creation of Seguro Popular (Popular Health Insurance), 40 which divides personal health services into essential packages of interventions financed by the Fund for Protection against Catastrophic Health Expenditures (FPGC). 41 The law came into effect on January 1, 2004, and dialysis and organ transplantation were among the 7 high-cost interventions included in the FPGC. In 2010, the MOH set up the Strategic Health Services Network Against Chronic Kidney Disease, emphasizing the need for early detection and treatment of CKD. 42

In 2015, the Mexican Health Foundation (FUNSALUD in Spanish) began organizing a series of meetings with representatives from Mexico’s health systems and members of the Mexican nephrology societies to reinitiate the setup of the dialysis registry, which had been abandoned by Mexican health authorities. After the ISN Global Kidney Policy Forum held at the ISN World Congress of Nephrology 2017 in Mexico City, the MOH implemented the pilot testing of the National Registry of Chronic Kidney Disease (RENERC in Spanish) as part of the nation’s health information system.

Thirty-five years after the constitutional reform of 1983, universal access to kidney care is yet to be realized. Since the implementation of Seguro Popular, the proportion of the population with some type of public health insurance has increased from 41% in 2002 to 81% in 2015 43 and the number of high-cost interventions included in the FPGC has increased from 7 to 68. However, Seguro Popular still does not pay for dialysis. As a result, the marked disparities between the insured and uninsured populations with access to KRT persist. By 2015, the incidence and prevalence of patients receiving treatment for ESKD with social security were 281 and 1357 per million population (pmp), respectively; however, 130 patients pmp on incident dialysis and 200 patients pmp on prevalent dialysis remained uninsured. 35

The introduction of legislation on organ donation and transplantation in 1984 resulted in a significant increase in kidney transplantation rates, from 1.57 pmp in 1984 to 22.8 pmp in 2015. However, this success is not observed in the population without social security. Because Seguro Popular still does not cover the cost of kidney transplantation and immunosuppressive drugs, transplantation rates remain significantly lower in patients without social security. 35

Eight years after the setup of the Strategic Health Services Network Against Chronic Kidney Disease, strategies to prevent CKD are yet to become part of the nation’s NCD health policies. CKD screening is low or nonexistent across Mexico. Furthermore, uninsured patients with predialysis CKD are often denied access to treatment by Seguro Popular once identified as having kidney disease. 35 Therefore, the opportunity to intervene to delay the progression of CKD is lost.

Finally, the dialysis registry is currently under pilot testing with the participation of several dialysis centers. The sustainability and nationwide expansion of the registry are yet to be seen.

Sudan (lower-middle-income country): evolution of strategies for CKD/ESKD care

During the 1970s, a Sudanese patient was treated in London, UK, for kidney failure by hemodialysis (HD). As he decided to continue his treatment under the care of medical staff of the University Hospital of Khartoum, his HD machine was the basis for the first dialysis unit in Khartoum.

Around the same time, a young surgeon by the name of Omar Beliel was sent by the University Hospital of Khartoum to train in England to be a neurosurgeon. While in the United Kingdom, he had kidney failure and eventually he received a kidney donated by his brother. Dr. Beliel later wrote an autobiography titled Two Lives: Death Odyssey of a Transplant Surgeon , 44 in which he describes how kidney transplantation gave him a “second life.” He subsequently shifted his training from neurosurgery to transplant surgery and performed the first kidney transplantation procedure in Africa from a living-related donor in 1974. By the mid-1970s, HD, intermittent PD through the use of hard catheters, and living-related kidney transplantation were established services at the University Hospital of Khartoum. However, these services were limited because of resources and the University Hospital remained mostly an academic and teaching facility.

The 1980s saw an expansion in dialysis services to benefit more patients, which was supported by the Ministry of Finance. It was soon evident that these services were costly and further expansion was unlikely to be feasible.

In 1994, the government called for Expert Opinion Conferences on How-Best-to-Do (HBTD) the civil services. The conferences called on scholars and experts in health, education, economy, and other areas to discuss reform of these issues and make recommendations to be executed by the government. A final recommendation in the area of health was to establish the National Centers of Health Care for 5 key areas: kidney disease, heart disease, oncology, gastroenterology and hepatology, and neurosciences. These national centers were required to plan for health care in their respective areas, along with suggestions and the means for successfully operating across the country. Thus, the National Center for Kidney Diseases and Surgery was established in 1995 and has been responsible for CKD/ESKD care across Sudan for the last 2 decades.

The National Medical Supplies Fund was established hand in hand with the National Centers of Health Care. The main objective was to procure and justly distribute medicines nationwide at the lowest cost. An important issue that resulted from the National Medical Supplies Fund policies was the need to have a national regulation for life-saving medicines (LSM), medicines that should be available to all citizens free of charge. After many discussions, it was agreed that the treatment of ESKD was to be considered a lifesaving issue and therefore both dialysis and kidney transplantation would be covered by the LSM bill. Thanks to this huge step forward, the development of both CKD services as preventive measures and ESKD therapy would be managed under the umbrella of the National Center for Kidney Diseases and Surgery.

Another important contribution to the success of managing CKD/ESKD in Sudan is the National Zakat Fund (NZF), which was established in the 1990s. Zakat is an Islamic concept where Muslims with the financial means are required to contribute 2.5% of their annual income as charity. The current government decided, for the first time, to create an organized institution to then use these funds in an orderly fashion. As the activities of the fund are regularly published, it became a trustworthy organization and most individuals who pay zakat prefer NZF to find suitable recipients of the aid. Religious scholars agreed that treatment of ESKD through dialysis and transplantation would be eligible to be supported by NZF.

In 2005, the National Medical Supplies Fund accepted continuous ambulatory PD as a viable option for treatment of ESKD, particularly for children and young patients. It has since become an option for ESKD management, albeit on a limited scale.

Using funds obtained from the LSM bill and NZF, the National Center for Kidney Diseases and Surgery is able to meet the requirements of providing CKD/ESKD care for citizens in Sudan.

Dialysis facilities and modalities

Sudan is the second largest country in Africa, with a total population of ∼38 million. Nearly all cities and large towns have governmental HD centers to care for patients with ESKD. Currently, the total number of HD centers is 72. There are 7200 patients currently on dialysis; 97% of these are on HD. 45 HD is based on twice weekly sessions for stable patients. The reason for this suboptimal dialysis schedule is to accommodate as many patients with EKSD as possible under the free-of-charge scheme of the national HD system. A recent survey showed that the 1-year survival of patients on twice weekly HD was 83%. 46 Patients who had functioning arteriovenous fistulas did significantly better than those who were dialyzed via cuffed or noncuffed central venous catheters. 46 Availability of continuous ambulatory PD is still limited to the greater Khartoum state. Although only 3% of patients on dialysis are on continuous ambulatory PD, the outcome and quality of life figures are rewarding. If PD fluid could be manufactured locally, ideally more patients on PD could be accommodated.

Kidney transplantation

The kidney transplant activities in Sudan over the last 5 years are increasing. Kidneys are transplanted exclusively from living-related donors. About 80% of the cost of the transplant is covered by either the LSM bill or NZF. All patients (irrespective of where the transplant was done) receive immunosuppressive drugs free of charge.

In summary, the most important milestones in developing a strategy for care for patients with CKD/ESKD in Sudan are as follows:

• • The call by the government in 1994 for national conferences to give advice on how best to do reforms across the country. This resulted in the birth of the National Center for Kidney Diseases and Surgery, which plans and supervises kidney care nationwide.
• • The introduction of the LSM bill was a novel resolution that made it possible to view CKD/ESKD care as a lifesaving issue, using funds to cover almost all citizens free of charge.
• • The Islamic system of zakat that requires eligible Muslims to voluntarily pay 2.5% of their annual income to support the poor or programs designed to help the poor. The addition of CKD/ESKD care to be covered by this fund has helped immensely.

Senegal (lower-middle-income country): fundamental development of CKD/ESKD care

Senegal is a country on the western tip of Africa, with a population of 15 million, and is one of the poorest countries in the world. Nephrology was unknown in Senegal until the return of the first Senegalese nephrologist after the conclusion of his training in France. Over time, a dedicated nephrology curriculum for undergraduate medical students along with HD and kidney biopsy practices has been introduced. Until 2010, however, there were only 2 HD centers in each of the public and private health sectors, dialysis costs were paid out of pocket by patients without health coverage, and there were only 3 nephrologists in the country.

Epidemiology

The prevalence of CKD in Senegal is estimated at 4.9%. 47 The main cause of CKD is hypertension, followed by chronic glomerulonephritis (especially primary focal segmental glomerulosclerosis), diabetes, and the use of traditional nephrotoxic drugs. The World Health Organization STEPwise survey found the prevalence of hypertension and diabetes in the general Senegalese adult population aged 45 to 49 years to be 25% and 5.4%, respectively. Advocacy and increased awareness among political authorities has made it possible to set up an NCD office at the MOH with a focal point on nephrology for the management of kidney disease. UHC was introduced in 2014, which provides free dialysis for Senegalese patients, but with limited availability. The government provides all dialysis supplies and a bundled payment of 10.000 FRFA (US$20) for each dialysis session at public dialysis centers. Patients, when dialysis slots are not available, are registered on the first come, first serve waiting list. In the meantime, to survive, patients must pay out of pocket to receive dialysis in the private sector.

Kidney care

A national and international nephrology referral service has been developed at the largest university hospital in Senegal. An average of 200 kidney biopsies are done each year, with samples processed and read on site. HD began at the largest public HD center with 25 stations, and HD services grew from 2 HD centers in 2010 to 20 centers all across Senegal. In 2004, the first PD center was established for the management of acute and chronic kidney failure in children and adults using continuous ambulatory PD and automated PD. 48 The costs of dialysis were first fully and then partially borne by the patient until 2012. Since 2012, dialysis costs, with the exception of epoetins and laboratory tests, are fully covered by the government in the public sector and partly covered in the private sector. In the public sector, dialysis supplies are obtained through the National Pharmacy Supply, through 2-year international tenders, permitting regular renegotiations. Kidney transplantation has not yet been done in Senegal. However, a working group with the support of experts drafted texts and laws governing organ transplantation, which passed a National Assembly vote on November 27, 2015. A presidential decree establishing the National Council for Organ Transplantation is on standby.

Training and education in nephrology

A nephrology school was opened in 2005 in Dakar to fill the gap of nephrologists in the sub-Saharan Africa region as no single country had more than 5 nephrologists, half the countries had no nephrologists, and Senegal had only 3 nephrologists. Between 2005 and 2017, by combining internal medicine and nephrology, the school trained 104 nephrologists from 21 African countries in a 4-year curriculum (including 2 semesters in France). A 2-year curriculum for nephrology nurses was introduced in 2008 and has trained 90 senior nephrology nurses from 7 African countries. In collaboration with the ISN, 3 training workshops on AKI, CKD, and PD have been organized with >400 participants per workshop to meet continuing medical education goals. 49

A working group with diverse experts (doctors, biologists, surgeons, pharmacists, and administrative staff) has been set up by the MOH to achieve an integrated CDK/ESKD care strategic plan. This strategy will enhance awareness and prevention, propose ways to reduce the growing number of patients on dialysis waiting lists, and extend PD to rural areas as it costs less than HD and will allow more patients with ESKD to be treated with dialysis. The annual cost per patient is US$13,650 for PD compared with US$18,000 for HD. 50 Training standards for health care workers must be developed in conjunction with nephrologists. The National Council for Organ Transplantation will be established, and the support of foreign partners will be needed for the accreditation of the initiation of living-related kidney transplantation.

An integrated CDK/ESKD care strategic plan was developed in 2019. The number of patients with CKD on dialysis has grown from 50 in 2010 to >800 currently; this number was doubled in 2019 with the opening of 10 new HD centers across the country. Two new PD centers were opened in 2019. This expanded the treatment of 60 patients with CKD and 20 patients with AKI at the current single center to the treatment of >150 patients with CKD and 50 patients with AKI. From 3 nephrologists in 2008, the country currently has 27 nephrologists and 128 nurses with specialization in nephrology; the goal is to train 5 additional nephrologists and 10 additional specialized nurses per year. The establishment of the National Council for Organ Transplantation will set the rules and criteria for accreditation, enabling the first successful kidney transplantation in Senegal in 2019.

CKD Strategy Cases

Uruguay (high-income country): prevention and treatment of ckd.

Uruguay, a developing country in South America with 3.44 million inhabitants, was classified as a non–Organisation for Economic Co-operation and Development high-income country by the World Bank in the last decade. In recent years, there has been a sustained growth in the aging of the population, and life expectancy at birth has increased to 77 years (73 years for men and 81 years for women). A National Integrated Health System (SNIS in Spanish) was launched in 2008 to provide UHC to the entire population. The total expenditure on health per capita in 2016 was ∼US$1800, which represents 8.6% of the nation’s gross domestic product. 51

The SNIS is funded by contributions from employers, employees, retirees, and tax revenues that go to the National Health Fund (FONASA in Spanish) and the National Fund of Resources (FNR in Spanish) ( Figure 3 ). 52 The FNR is a public nongovernmental agency, created by law in 1980 with the purpose of providing funds for highly specialized medical procedures, such as dialysis and transplantation, on the basis of approved protocols. This fund accounts for ∼10% of all public expenditures on health; expenses related to dialysis account for ∼27% of the entire fund.

National Integrated Health System (SNIS in Spanish) financial sources in Uruguay. Reproduced with permission from Ministerio de Salud Pública. La Construcción del Sistema Nacional Integrado de Salud. 2005–2009. Available at: http://www.paho.org/hq/dmdocuments/2010/construccion_sist_nac_integrado_salud_2005-2009-uruguay.pdf . Accessed March 18, 2018. 52

Action and strategies for CKD/ESKD care

UHC of patients receiving KRT has been available since 1981, with the financial support of the FNR. Data on these patients are collected by the Uruguayan Dialysis Registry.

In April 2004, representatives from the Uruguayan and Latin-American societies of nephrology, the Uruguayan Department of Health, and the FNR signed the Declaration of Montevideo with the aim of enhancing CKD care and recommended an Advisory Committee on Renal Healthcare to develop a National Renal Healthcare Program. Six months later, a pilot program was launched that included (i) education programs on kidney health care, including information on a healthy lifestyle, in the general population, with the aim to reduce cardiovascular and kidney risk factors; (ii) increased accessibility to kidney health care at the primary care level; (iii) promotion of early diagnosis of CKD in the population at risk; (iv) enhanced care given to patients at all stages of CKD; and (v) prevention of cardiovascular morbidity and mortality, as they are high in the target population. 53 , 54

The methodology for developing and spreading the National Renal Healthcare Program included several advances: (i) the development of clinical guidelines for identification, 55 evaluation, and management of patients with CKD at the primary care level; (ii) the creation of kidney care teams (including a nephrologist, a dietitian, and a nurse) to work in primary care centers to treat patients referred to them by primary care practitioners; (iii) the management of patients with CKD stage 1 to 3 directly by the laboratory; and (iv) patients with CKD stage 4 and 5 were referred to a CKD advanced clinic, staffed by a formal multidisciplinary team including nephrologists, dietitians, nurses, psychiatrists, vascular surgeons, and social workers.

An online CKD registry housed at the FNR records data on patients with estimated glomerular filtration rate (eGFR) < 60 ml/min per 1.73 m 2 and persistent albuminuria >300 mg/d (or >30 mg/d in patients with diabetes) and features a centralized alarm system to minimize failure to follow-up. 56 Although the National Renal Healthcare Program is not mandatory for every health care provider, the feasibility of this is being studied. 57

Since 2009, testing for CKD in high-risk populations (case finding) has been incorporated into the mandatory health checkups of the working population via a decree of the Department of Health. Evaluation includes urine examination and serum creatinine tests in diabetic and hypertensive individuals. 58

Not all Latin American countries provide the same level of CKD care, which is why the Latin-American Society of Nephrology and Hypertension (SLANH in Spanish) and the Pan American Health Organization declared that all countries should improve CKD care and increase coverage of dialysis treatment. Together, through Pan American Health Organization’s virtual space, they launched an online course (in Spanish and Portuguese) on CKD prevention and care in July 2016, aimed at primary care practitioners throughout Latin America. 59

Uruguayan Dialysis Registry

Data from the Uruguayan Dialysis Registry found that diabetic and hypertensive diseases are the most common causes of ESKD. 60 The prevalence of ESKD was 756 patients pmp, with 90% on HD and 10% on PD in December 2014; the prevalence of ESKD is 1031 pmp when patients with a functioning kidney allograft are included.

CKD registry

The target population and the variables included in the registry have already been described elsewhere. 61 Between October 1 and December 31, 2017, 20,879 patients were recorded; the mean age was 66 years, and 47.6% were female. The most frequent causes of CKD were vascular nephropathy (40.8%), diabetic nephropathy (19.1%), obstructive nephropathy (7.9%), and primary glomerulonephritis (4.8%). The most frequent risk factors for kidney disease were hypertension (86.9%), dyslipidemia (54.2%), diabetes (37.3%), and obesity (37.7%). Most patients were referred to a nephrologist at later stages (CKD stage 3 or greater). 62

Every year, the Advisory Committee on Renal Healthcare carries out an evaluation that assesses the quality of care at the primary level, the achievement of therapeutic goals under nephrology care, the rate of progression of CKD, and the mortality due to ESKD. There has been a sustained increase in blood pressure control care since 2005, with the proportion of patients with systolic blood pressure <140 mm Hg and diastolic blood pressure <90 mm Hg rising from 36.5% to 63.9% and from 58.5% to 86.5%, respectively. 63

Table 3 highlights some indicators of kidney care in Uruguay. 64 More than 50% of patients are stabilized with an eGFR loss of <1 ml/min per 1.73 m 2 per year, and 79% of patients with diabetes and albuminuria are taking renin-angiotensin system blockade (despite heterogeneity between groups, ranging from 54% to 96%). The risk of new cardiovascular events was related to previous cardiovascular disease, diabetes, male sex, and increased age and albuminuria and had a U-shaped curve for systolic blood pressure. 65 Other than well-known risk factors such as albuminuria and blood pressure, acidosis was related to greater increase in creatinine. 66 Finally, there is evidence that predialysis CKD care may improve outcomes once patients are established on dialysis in Uruguay. 67

Table 3

Achievement of quality of care indicators under nephrology care in Uruguay (National Renal Healthcare Program 2004–2016)

eGFR, estimated glomerular filtration rate; LDL, low-density lipoprotein; RAS, renin-angiotensin system.

Since 1981 in Uruguay, there is UHC for dialysis. A CKD screening and prevention program was launched in 2004. Today, these are being incorporated into mandatory health programs, with the aim of making them universal throughout the country. There has been improvement in the quality of care as well as a reduction in CKD progression; the potential benefits of predialysis CKD care seem to extend even to patients who eventually have kidney failure. CKD care requires the commitment of the nephrology community and the national authorities. The former provides guidelines for systematic CKD detection and follow-up, while the latter sets the framework for health care providers and ensures the provision of UHC for treatment from the early stages of CKD to dialysis and kidney transplantation.

Thailand (upper-middle-income country): unique CKD prevention program

The prevalence of CKD stage 3 and 4 in Thailand is 9.3% for those older than 18 years, representing 4.8 million people, with a further 4.6 million people with CKD stage 1 and 2. 68 Diabetes mellitus and hypertension are the main causes of CKD. 69 The Ministry of Public Health has divided the country into 12 health care regions (excluding the Bangkok metropolitan area), with each region consisting of 4 to 8 provinces covering a population of ∼5 million. Within each province, there are between 6 and 30 districts, each with their own district hospital. Within each district, there are a further 5 to 10 subdistrict health offices. A district hospital usually comprises general practitioners, nurses, pharmacists, a physical therapist, and, in larger hospitals, a nutritionist. At each subdistrict health office, there are 1 to 2 public health officers and 1 to 2 community nurses, caring for anywhere between 3000 and 5000 inhabitants. Community nurses are responsible for basic drug prescription, on behalf of the district hospital, and for treating common ailments. Moreover, there are village health volunteers, grassroots personnel, who provide a connection between villagers and health personnel and cover public health issues at the village level. Basic health care programs in Thailand are implemented through this infrastructure. Across Thailand, there are ∼10,000 subdistrict health offices and >1 million village health volunteers. 70

Diabetes mellitus and hypertension are the 2 most common NCDs in rural areas. To cope with these problems, general practitioners, diabetes/hypertension case manager nurses, and multidisciplinary care teams work together at the district hospital level. Community nurses and village health volunteers are also responsible for medication refills for stable patients and facilitate patients’ self-care and any necessary lifestyle modifications. Key performance indicators from all public hospitals are transferred to the Health Data Center of the Ministry of Public Health. Table 4 illustrates a set of key performance indicators of diabetes and hypertension. 71

Table 4

Key performance indicators of diabetes mellitus and hypertension reportable to the Ministry of Public Health, Thailand

HbA 1c , hemoglobin A 1c .

It is challenging to use the limited resources available in the country to delay the progression of CKD on a national scale. Community nurses and village health volunteers, who are more present in the community, can be trained to decrease the reliance on multidisciplinary care teams who are present only in hospitals. This is a paradigm shift from hospital-based to a joint hospital-community–based approach.

To test this concept of care, a pilot project was launched a few years ago in Kamphaeng Phet Province, 400 km north of Bangkok. In brief, this study took place at 2 districts within the province. 72 In district hospital A (control), there was no multidisciplinary care team available and patients were cared for as usual by general practitioners and diabetes/hypertension/NCD nurses. There were no home visits by community nurses/village health volunteers. In district hospital B (intervention), multidisciplinary care teams, community nurses, and village health volunteers were trained on CKD with information on lifestyle modifications and dietary counseling. Educational materials and a protocol checklist were provided in accordance with the Nephrology Society of Thailand and international guidelines on CKD management. 73 , 74 CKD cases were referred by community nurses/village health volunteers during regular home visits to multidisciplinary care teams at the district hospital. The community nurses/village health volunteers also had a checklist on exercise, smoking cessation, avoidance of analgesic/nonsteroidal anti-inflammatory drugs, and avoidance of high salt and protein intake. Two years later, patients with CKD in the intervention group had lower dietary salt and protein intake and lower rates of eGFR decline than did those in the control group. 75 An economic evaluation demonstrated that this program was cost-effective. 76 The conclusions of this study imply that integrated care provided by multidisciplinary care teams at district hospitals in combination with home visits by community nurses/village health volunteers could help delay the progression of CKD through lifestyle modifications, without the intervention of specialists.

In 2015, the Ministry of Public Health announced the prevention of CKD as a national health priority. All referral, provincial, and district hospitals were requested to set up multidisciplinary care teams around CKD. A protocol checklist on the essential parts of CKD management and key performance indicators of CKD were agreed upon. A reference eGFR equation was declared, and the implementation of national serum creatinine standardization is underway.

Our findings illustrate favorable outcomes in a CKD prevention program at a national scale ( Table 5 ). 71 It is yet too early to identify absolute eGFR change over time. We recognize that the key success factors behind our CKD program are the homogeneity of an existing well-organized primary health care system, the inclusion of an integrated care team at district hospitals, frequent home visits by community nurses and village health volunteers in the program, and, most importantly, a strong sense of belonging to their native homeland of the personnel. Our experience shows that in developing countries such as Thailand, combating CKD progression under limited resources is possible, provided that an integrated care program is developed, including trained multidisciplinary care teams, educational materials, protocol checklists, and dedicated community nurses and village health volunteers. This program could be sustainable and cost-effective.

Table 5

Key performance indicators of CKD reportable to the Ministry of Public Health, Thailand

ACEi, angiotensin-converting enzyme inhibitor; ARB, angiotensin receptor blockade; CKD, chronic kidney disease; eGFR, estimated glomerular filtration rate; HbA 1c , hemoglobin A 1c .

United Arab Emirates (high-income country): early detection of CKD in Abu Dhabi

In 2012, the prevalence of ESKD and CKD in Abu Dhabi were unknown, but the population on dialysis was doubling approximately every 5 years. Of the new patients starting dialysis, 90% started with <90 days of predialysis care, only 2% of patients had a fistula at their first dialysis session, and patients primarily started on HD. There were no systematic attempts at early detection and management of CKD as the projection of future patients with CKD was unknown.

SEHA, the government health system within Abu Dhabi, has a single electronic medical record system that covers the whole country. The data contain patient demographics and information on all patient encounters. Between September 2011 and October 2012, data on 212,314 adults were extracted from the electronic medical record. The eGFR was calculated for every serum creatinine measurement and was used to calculate an estimate of CKD prevalence on the basis of the population breakdown. The prevalence of CKD stage 2 to 5 was estimated to be 22.6% in Emirati men, 12.9% in Emirati women, 26.6% in foreign men, and 16.5% in foreign women.

To address the relative high rates of CKD, extensive discussions occurred at both primary and secondary levels of care; a potential solution was introduced in February 2014. This solution included the adoption of several strategies: the automated calculation of eGFR using the CKD Epidemiology Collaboration 77 equation embedded within the electronic medical record; an automated addition of International Classification of Diseases 9th and 10th Revisions codes for CKD to the electronic medical record based on Kidney Disease: Improving Global Outcomes (KDIGO) CKD 2012 criteria 74 ; an algorithm-based management of CKD; online physician decision support for referral and medication management; physician feedback at the individual, practice, and regional level; and kidney nurses working both at the primary level of care and in multidisciplinary advanced CKD clinics.

At the outset of the program, 35% of patients with CKD stage 3 to 5 managed within primary care and 20% managed within secondary care were taking nonsteroidal anti-inflammatory drugs. From 2011 to 2012, these rates fell to 15% and 10%, respectively. To date, 29,000 patients with CKD have been identified, of whom 25% are at high risk of progression as per the KDIGO classification. 74 More than 3500 patients, however, have had a >30% improvement in eGFR over a 2-year follow-up period. The presentation rate for dialysis with <90 days of predialysis care (emergency start) has fallen from 90% to 35%. The proportion of patients commencing dialysis with an arteriovenous fistula has risen each year, with 34% starting dialysis with a fistula in 2018.

This program of early detection and management of CKD has been extremely successful and continues to improve outcomes for Emirati patients. The program has clearly demonstrated the ability to modify physician prescribing behavior and exemplifies value-based health care with improved patient outcomes at a reduced cost to the health system. Data analysis is ongoing, with more work needed on defining the incidence density of progression to KRT and death as well as hazard ratios of progression and the impact of changes in medication regimen.

HD Strategy Cases

Malaysia (upper-middle-income country): near-universal coverage for dialysis.

Nephrology services in Malaysia have come a long way, from a humble beginning in the 1960s with steady growth to the mid-1970s, when the country was still categorized as an agricultural-based LMIC. With rapid development in the last 2 decades, a full range of nephrology services is now readily available throughout the country at an affordable cost. For an upper-middle-income country, Malaysia has an impressive treatment rate for patients with ESKD.

Action and strategies for HD and PD

How does malaysia achieve near-uhc for dialysis.

Over the last 5 decades, the nephrology community in Malaysia has worked toward achieving the World Health Organization indicators of UHC 78 of dialysis via good stewardship and governance (provided by the government), nephrology champions, key opinion leaders, and professional societies via the following strategies.

Effective stewardship of health reforms

• • Strong support via the MOH by providing sufficient funding for the development, operation, and subsidy of dialysis centers and services throughout the country.
• • Ongoing planning over the last 40 years.
• • Cooperation between private corporations and NGOs to develop more HD centers.

Effective stewardship of public funds

• • Allocation of more funds from the MOH to expand services, particularly in rural areas.
• • Allocation of subsidies to NGOs by the MOH and Treasury.
• • Outsourcing of dialysis to private centers by the Public Service Department, Social Security Organization, and zakat. All of the above agreed to consider dialysis as rehabilitation therapy.
• • Purchasing HD services from all qualified providers.

These measures were a major departure of standard policies of the public sector in the 1970s and 1980s. The funding of dialysis was one of the very first mixed public, private, and NGO financing operations in Malaysia.

Stewardship in proper training of doctors and allied health staff

• • Emphasizing the importance of a proper training program for nephrologists, kidney nurses, and allied head staff, with a syllabus, logbook, and exit evaluation where trainees are assessed by local and external examiners.

Ensuring quality and integrity

• • Introduced quality initiative efforts, such as the development of practice guidelines on KRT and a document on Hemodialysis Quality Standards.
• • Established National Renal Registry (jointly between the MOH and the Malaysian Society of Nephrology) to provide accurate data for health care planners, clinicians, and multinational dialysis industry companies.

Public–private partnership

• • There continues to be collaboration among government, professional societies, private industry, NGOs, and local manufacturers (consumables and solution). There is also widespread implementation of health care laws that have enabled organizations to start an HD facility irrespective of whether they have links to a hospital.

During the last 3 decades of transformation from LMIC to upper-middle-income country, the above measures have resulted in near-universal access to dialysis for all patients with ESKD, at a reasonable cost, with comparable quality to many developed countries.

Malaysia has an interesting dual-tiered system of health care services consisting of a government-led public sector that coexists alongside a private-NGO sector, creating a synergistic public–private/NGO model. The government is the main source of funding for new and existing patients on dialysis (55%–60%); out-of-pocket payments or self-funding for dialysis was ∼26% to 30%; and funding from NGOs remained at 11% to 15% over the years. 78 Public financing, mainly through taxation and/or social health insurance (e.g., Social Security Organization), is the dominant form of financing for dialysis. The majority of patients on HD are treated in the private/NGO sector (54%), but almost all patients on PD are treated in government facilities (97%) via financing operations described above. 79 The total health expenditure in Malaysia was 4.21% of the gross domestic product (RM51,742 million) in 2016 80 ; the total spending on dialysis was US$100 million, accounted for 1.72% of the total health expenditure in 2005. 81

In Malaysia, diabetes and hypertension were the most common causes of ESKD, 82 with the prevalence of 17.5% and 30.3%, respectively, in those older than 18 years. 83 The prevalence of CKD stage 5 was 0.36% in those older than 18 years. 84 Recent forecasting estimates that the cost to treat 51,269 patients on dialysis in the year 2020 will be US$384.5 million. 85 This burden has implications for future health care financing. The prevalence of ESKD is increasing at an alarming rate. Options proposed to tackle this issue include early medical intervention to slow the progression of CKD in high-risk patients, the promotion of kidney transplantation, and the use of more cost-effective dialysis therapies. In Malaysia, kidney failure prevention initiatives have been carried out nationwide, including patient screening in the primary care setting, the prevention of kidney failure workshops targeting primary care doctors and allied health care staff, the development of clinical practice guidelines on CKD management and nephrology services operational policy, and national public awareness of World Kidney Day. Despite kidney transplantation providing the best KRT option, the transplantation rate remains low at 3 pmp owing to a lack of donors, leaving the choice of KRT between HD and PD. 82

In Malaysia, citizens can access the subsidized dialysis services provided by the MOH at university hospitals, Ministry of Defense hospitals, and local authorities. Public sector health care services are considered a national health service with its tax-based financing and heavy subsidies. NGOs and political parties also provide support either by providing services (e.g., dialysis services by the National Kidney Foundation), subsidizing part of the payment, or assisting in the appeal for public donations. These measures combined have resulted in expanded coverage of stand-alone dialysis services over the years ( Figure 4 ), with the number of dialysis centers across Malaysia increasing from 205 in 2000 to 758 in 2014. 79 , 81 , 86

Providing dialysis to meet Malaysian needs. Dialysis treatment by sector (per million population [pmp]), 1980–2016. 79 , 81 , 86 BAKTI, Badan Amal dan Kebajikan Tenaga Isteri-Isteri Menteri dan Timbalan Menteri (Charitable and welfare bodies of the wives of Ministers and deputy Ministers); HD, hemodialysis; JPA, Jabatan Perkhidmatan Awam (Public Service Department) (civil servants and their dependants would be reimbursed by the government); MOH, Ministry of Health, Malaysia (public health care services are funded through general taxation, with annual health budgets allocated by the Ministry of Finance to the MOH); NGO, nongovernmental organization (NGOs are providing support to access dialysis by either providing some of these services [e.g., dialysis services by the National Kidney Foundation {NKF}], subsidizing part of the payment, or assisting in appealing for public donations [e.g., NKF]); SOCSO, Social Security Organization (a government-run social insurance body that receives mandatory contributions from private-sector employees earning below US$950 per month); YKN, Yayasan Kebajikan Negara; Zakat, state-run Islamic social welfare organizations reimburse eligible patients for certain treatments and dialysis, which was included as a rehabilitation therapy.

Between 2005 and 2014, private dialysis centers have almost tripled from 6 to 14 pmp, NGO centers increased from 4 to 5 pmp, and the pmp rate of public centers remained unchanged. Private dialysis centers are distributed mainly in economically developed west coast states of Peninsular Malaysia. The government operates most of the dialysis centers in less developed areas.

Reimbursement by government agencies per HD treatment at private and private for-profit HD centers has not changed since 1999 and remains at about RM120 to RM200 and at RM150 to RM200 per dialysis session, respectively. 81 There were 37,183 patients on dialysis in 2015. 79 In 2015, the incidence and prevalence rates of dialysis were 261 and 1295 pmp, respectively. 82 These rates compare favorably to more developed countries in the region, such as Singapore, South Korea, and Hong Kong. 87

In summary, the number of patients receiving KRT has increased sharply over the last few decades. Malaysia, an upper-middle-income country, has been able to achieve near-UHC for dialysis and consistently reports outcomes; this is usually observed only in industrialized nations. This achievement is due to good stewardship and governance shown by the government, professional societies, NGOs, and clinical champions.

Malawi (low-income country): unique strategy for ESKD care

Malawi, a country of 16.7 million people, has offered free HD services for both AKI and ESKD since 1998. 88 , 89 The first dialysis unit was established in 1998 in Lilongwe with a donation of 4 Gambo AK 95 machines (Baxter International Inc.; Deerfield, IL). As the original HD machines were in poor working order, with spare parts difficult to obtain, patient care was often interrupted and outcomes were generally poor. A second unit was established in Blantyre in 2011 with 4 of the same HD machines to face the increasing demand for services and to reduce the large distances that patients would be required to travel to access dialysis.

All HD machines and water plants were replaced at both units between 2013 and 2014. Lilongwe now has 10 stations and Blantyre has 5. A public–private initiative with Fresenius Medical Care (based in South Africa) has provided 5 additional units; the water plant and dialysis machines were offered at no direct capital cost as part of a 5-year contract to purchase consumables from Fresenius. Training of medical and nursing staff has also been a core component of improved service delivery in Blantyre through the Sister Renal Center Program from the ISN. Dialysis is provided on a twice weekly basis, which has increased the number of patients treated, though at a cost of delivering a lower dialysis dose.

Although HD services have expanded, providing integrated care for kidney disease remains a challenge. Regular adult and pediatric nephrology clinics help identify patients approaching ESKD, but the overwhelming majority of patients present in extremis, requiring emergency dialysis for both AKI and ESKD. Screening patients for CKD in high-risk groups such as those with diabetes, hypertension, and HIV remain challenging because of many reasons including the cost of materials such as urine dipstick and laboratory reagents, a low awareness of kidney disease among the public and medical professionals, and the sheer volume of patients.

There is currently no access to transplantation within Malawi; instead, patients are sent overseas for living donor transplants at a cost of ∼$30,000 borne by either the patient or the government. PD has been delivered when suitable supplies of PD fluid and equipment have been available, but these periods are brief and difficult to sustain. Thus, HD remains, and is likely to remain, the predominant dialysis modality in Malawi. Vascular access for HD also remains a challenge, and surgical expertise is urgently required to address this. Some patients do have a native arteriovenous fistula that was created by either a surgeon in Malawi or visiting specialists, but a regular vascular access service has not formally been established. Complications from both temporary and semipermanent HD catheters are both common and severe.

Significant efforts are being made to provide integrated care for CKD and AKI in Malawi. Both HD units have focused on the development of predialysis nephrology services in terms of clinical activity, teaching, and research. Screening for CKD in high-risk patients such as those with diabetes and HIV has identified an unexpectedly high prevalence of CKD; this further highlights the importance of robust mechanisms for the early detection and management of CKD. 90 , 91 Clinical expertise for nephrology in Malawi remains a significant challenge—the country has just received its first qualified nephrologist. The nursing staff in dialysis units represents an excellent source of clinical expertise and have been instrumental in advancing the delivery of dialysis care and education together with physicians and clinical officers.

Kidney services in Malawi have been supported by bidirectional teaching and training programs with Barts Health NHS Trust in the United Kingdom. This partnership has helped develop clinical, research, and teaching expertise. The volume of patients with kidney disease in Malawi, both acute and chronic, has required the development of a specialist kidney ward to care for patients with both AKI and ESKD at Queen Elizabeth Central Hospital in Blantyre. To address the needs of patients who do not proceed with dialysis, a partnership with palliative care services has been established. This service provides holistic and symptomatic care for patients with ESKD in the absence of dialysis. 92 , 93

Preliminary discussions around providing transplantation in Malawi have identified attendant laboratory, pharmacy, clinical, legal, and ethical challenges; although difficult, they are not impossible to overcome. Although transplantation in Malawi will ultimately lead to a better quality of life for patients and lower direct cost to the government, it remains some years away.

The total number of patients on dialysis in Malawi has dramatically increased with the provision of new equipment, allowing better access to dialysis for both patients with ESKD and those with AKI. 88 Increasing dialysis has saved lives but at a high cost to the health economy, and the HD capacity is not yet sufficient to treat every case of ESKD. Patient dialysis groups in Malawi have become strong and vocal advocates for services for patients with kidney disease and are instrumental in sustaining and improving HD services in conjunction with clinicians. The educational activities undertaken over the last 7 years have strengthened the clinical and research expertise in Malawi. There are significant challenges ahead for kidney care in Malawi, but working with the ISN on the Kidney Care Network project has the potential to make a major impact on the care of AKI, ultimately saving lives. Strengthening the breadth and depth of clinical nephrology expertise sustainably will require continued financial and operational support from the Malawi government and is essential to a national kidney strategy in Malawi.

Kenya (lower-middle-income country): upscaling HD

Kenya, with a population of >50 million, has a huge number of patients with kidney failure and who would potentially benefit from KRT.

HD was first offered in Kenya in 1964 when an HD machine had to be flown in from England along with a team of doctors for a British soldier. In 1970, regular HD was offered in an intensive care unit at the referral hospital, Kenyatta National Hospital (KNH) in the capital Nairobi. PD was introduced in 1971, but this expertise was available only in Nairobi. A kidney unit was established at KNH in 1979, and it remained the only unit in the country until 1982, when private hospitals started offering both HD and PD. As these units were located only in Nairobi, other regions still had no access to HD and anybody who needed dialysis traveled to the capital city. By 1990, most provincial hospitals had the personnel to provide acute PD and a few patients started on continuous ambulatory PD. With the introduction of the double bag system in 2002, PD slowly became costlier than HD and few patients opted for this modality. Starting in 2002, satellite HD units appeared outside Nairobi; by 2006, however, there were still only 4 government hospitals offering HD across the country.

In 1978, the first ever kidney transplantation was carried out in a patient whose horseshoe kidneys had been mistaken for an abdominal mass and inadvertently removed; she lived for 1 year after surgery. A few private hospitals started kidney transplantation in 1984, though the numbers were low and irregular. By 1988, KNH was also doing kidney transplantation; however, over the next 20 years, only 130 had been done.

In 2010, it became clear that the government could no longer cope with the growing burden of ESKD and the Kenya Renal Association drafted a plan to increase kidney services ( Table 6 94 , 95 , 96 , 97 , 98 , 99 ).

Table 6

Progress of kidney services in Kenya since 1995

Actions and strategies for CKD/ESKD care

A partnership between KNH and Novartis Pharmaceuticals was established in 2010 to retrain the transplantation team at KNH. Over the next few years, with travel between Spain and Kenya, the team was fully equipped to run a successful transplantation program. The number of transplantations increased, and expertise was shared with some of the private hospitals.

Because of lobbying from powerful dialysis patient groups to improve the situation in the country, the government implemented the Kenya Renal Association recommendations to increase kidney services in 2015. Recommendations that were implemented included the establishment of at least 1 HD unit in each of the 47 counties with 5 machines each over a 2-year period. This task involved the government creating new structures in regions that did not have the necessary infrastructure. Currently, 90% of the county units, representing 40% of dialysis units in the country, are in place and delivering services to patients.

The National Hospital Insurance Fund, established in 1966, provides UHC to all Kenyans 18 years or older and who have a monthly income of >US$10; monthly contributions range from US$5 to US$17. The National Hospital Insurance Fund has the aim of ensuring access to affordable, sustainable, equitable, and quality care and was entrusted by the government to provide funds to reimburse dialysis centers.

Kenya has been entrusted with the East African Kidney Institute of Urology, Nephrology, and Transplantation as part of a new initiative set up by the African Development Bank. The overall objective of this institute is to develop a world class institution that facilitates the realization of the vision to strengthen health training, research capacity, and provision of services to the local and international communities, more so in the East and Central African regions. Although a full nephrology fellowship program is 2 years in length, to address the urgent need for trained doctors, the institute created a 3-month preceptorship.

Despite the advancements in infrastructure, many challenges remain ( Table 7 ). A good supportive structure is needed to ensure the success of the program. Involving partners such as the World Health Organization, United Nations, and ISN to support the program and endorse safety is important. Adapting good guidelines that suit the patient needs is critical.

Table 7

Challenges for the growing kidney replacement therapy program in Kenya

BMD, bone mineral density; PD, peritoneal dialysis.

The MOH is charged with implementing this program and to ensure standards are met by empowering the medical board. Funding comes from the National Hospital Insurance Fund, and the supply of medicines comes from the Kenya Medical Supplies Authority, a state corporation whose mandate is to procure, warehouse, and distribute drugs and medical supplies for prescribed public health programs.

In 2017, a health bill was passed into law, which enables public hospitals in Kenya to start deceased donor (DD) kidney transplantation. Once implemented, this law will ease the number of patients waiting for a kidney transplantation. The Kenya Renal Association, which oversees the program, has started creating a registry for dialysis and transplantation. Nephrologists work closely with the MOH to ensure standards for safe HD are met by each unit. A national epidemiological survey to determine the number of patients with kidney disease in Kenya is being planned. Despite all these systems being put into place, further team efforts are required to ensure success.

PD Strategy Cases

South africa (upper-middle-income country): pediatric pd for eskd.

ESKD in pediatric patients is a significant problem in South Africa as it is in many parts of the world. Adults often get preference in terms of dialysis and transplantation.

Facilities are present in 3 of the larger academic centers—Johannesburg, Durban, and Cape Town—to provide KRT and transplantation to children who have access to these centers. There is lobbying at the local hospital level for the purchase of pediatric and, in some centers, infant dialysis equipment. Provision for pediatric facilities has also been facilitated in some private facilities. There has been some lobbying at the government level for specific pediatric support but with limited success.

Like adult centers in South Africa, pediatric centers do not provide chronic dialysis for children unless they are suitable for transplantation. This has proved difficult as many children have started on acute dialysis, only to be changed to conservative care as their family and home facilities are not suitable for long-term dialysis. This transition plan has been difficult for some centers, and thus long-term dialysis has been started in some children without a satisfactory plan for future dialysis.

The first strategy in developing a pediatric dialysis program in South Africa is to create pediatric programs where adult programs exist. Adult programs can then provide the initial knowledge and technical support associated with caring for adolescents and bigger children.

The next strategy is to use a PD-First approach for children who have been accepted for transplantation and thus dialysis. This uses automated home cycle machines for overnight dialysis while children are sleeping, enabling them to continue school during the day. Families are trained during an in-patient visit over a period of 2 weeks and then examined on their technique before discharge. In most centers, a single home visit is done to see if this is a suitable option as well as to advise them in practical matters of having a dialysis machine at home. There are currently 2 marketed machines for home automated PD in children: Homechoice Claria by Baxter International Inc. and Sleepsafe by Fresenius Medical Care (Waltham, MA).

Advanced technology (Claria Baxter) now allows the remote daily follow-up of overnight dialysis patterns.

Other strategies include the training and employment of specialized advanced nurse practitioners who can operate in- and outpatient PD programs.

Children who have failed PD and would go onto HD provide the challenge to appropriate pediatric and infant HD lines and filters. While pediatric centers are being established, bigger children will often initially dialyze in adult facilities. This emphasizes the need for training of medical and nursing staff in both adult and pediatric centers.

The ultimate goal in pediatrics is to arrange kidney transplantation as soon as possible; this avoids stunting due to long-term dialysis. To ensure the success of a pediatric transplantation program, it is critical to have a few dedicated centralized areas across the country. This will centralize the skills base and improve results.

Over the last 10 years, pediatric nephrology has grown in South Africa from 10 to 27 active pediatric nephrologists. Over the last 15 years, at the Red Cross Children’s Hospital alone, we have trained a further 24 pediatric nephrologists from elsewhere in Africa.

The challenge remains to increase the training of nurses, technicians, and advanced nurse practitioners to provide dialysis and transplantation for children.

Overall, the situation is slowly improving: in December 2016, the South African Renal Registry found that there were 54, 53, and 86 patients younger than 19 years on PD and HD, and with a functioning transplanted kidney, respectively (with permission from Razeen Davids, Webmaster of South African Renal Registry). The result of staff training as well as collaboration with adult nephrology teams gives hope for the future of pediatric patients with nephrology disorders in South Africa as well as in other parts of Africa.

Transplantation Strategy Cases

South korea (high-income country): system development for dd kidney transplantation.

Kidney transplantation improves the quality of life of patients with ESKD and is cost-effective. The first living-donor kidney transplantation in Korea was conducted in 1969, and the first DD kidney transplantation was conducted in 1976. The number of hospitals performing kidney transplantation has since rapidly increased. However, as most kidneys are donated within families and there is an increasing trend of smaller families, living donor kidney donation has stagnated. Furthermore, the revered traditional Confucian view teaches that your entire body was given to you by your parents and people are taught to value their bodies. The meaning of this teaching has been overinterpreted to mean value all parts of human body even after death , resulting in the rejection of organ procurement from DDs.

To address the shortage, in 1988, the Korean Society for Transplantation proposed DD organ transplantation legislation to the congress. Although DD kidney transplantation was being conducted by several hospitals at the time, it took 10 years to secure legal support for it. This situation resulted in kidneys from the poor being traded on the black market. Thus, a renewed legal review of brain death was initiated, and the Organ Transplantation Law was passed in 1999 and the Korean Network for Organ Sharing was established in 2000. The major role of the Korean Network for Organ Sharing was to review the legal and ethical relationship between living donors and their recipients. It also became responsible for the management of the transplantation wait-list and the allocation of DDs. Over time, the Korean Network for Organ Sharing became a national authority, regulating organ transplantation–related activities.

The overly tight regulation of each process soon resulted in a decline in kidney transplantation, and the annual number of patients who died while waiting for organ transplantation increased. Patients became increasingly desperate, and overseas transplantation rapidly increased starting in 2002. The Organ Allocation Study Group, under the Korean Society for Transplantation, elected to change its name to the Deceased Organ Donation Improvement Program Committee in 2009 and started devoting its efforts to formulating strategic plans for reactivating DD organ transplantation. The Organ Allocation Study Group cooperated with the congress in revising the existing law in 2010, adding a law on mandatory reporting, the establishment of an independent organ procurement organization, and the implementation of a transplantation registry.

Vitallink is an NGO that was established by the Korean Society for Transplantation in August 2009 to promote public awareness of DD organ donation. Vitallink educates medical and high school students about organ donation. Vitallink also established the Korean Organ Donation Network in 2010 to conduct consistent education for NGO leaders. They jointly collaborate with Catholic and Buddhist NGOs to host various campaigns. Finally, Vitallink has been supporting the development of the Asian organ transplantation program through annual workshops and the provision of training courses for medical professionals from Korea and abroad.

The Korea Organ Donation Agency was established in 2009. Currently, this agency has jurisdiction over 3 regional divisions. The main responsibility of procurement coordinators is to discover potential DDs by visiting hospitals. When the Korea Organ Donation Agency receives notification of a potential brain death donor, they first visit the hospital to conduct a primary medical evaluation for donor eligibility and then obtain consent from the family, process the evaluation of brain death, and contact and coordinate the organ procurement teams and operations. After donation, they collect the body to transfer to the family and provide emotional support. The Korea Organ Donation Agency is also in charge of education for medical professionals and donor families.

In 2014, the Korean Society for Transplantation established a web-based registry, the Korean Organ Transplantation Registry. The Korean Organ Transplantation Registry collects data on ∼85% of all organ transplantation and issues an annual report. They have hosted various seminars and provide research grants and awards. The Korean Organ Transplantation Registry has now started the Asian Organ Transplantation Registry (ASTREG).

The rate of DD organ transplantation in Korea has greatly increased because of the adoption of new strategies ( Figure 5 ). 100 This increase has led to a decrease in the number of overseas transplantation ( Figure 6 ). 100 As of 2017, the number of DD organ donations in Korea was 10.7 pmp, the highest in Asia; however, Korea is still ranked only 37th worldwide. To provide a better life for patients with ESKD in Korea, partnerships will be required with other Asian countries in organ transplantation.

Number of kidney transplantation cases in South Korea. Data from Ahn HJ, Kim HW, Han M, et al. Changing patterns of foreigner transplants in Korea and overseas organ transplants among Koreans. Transplantation. 2018;102:310–317. 100 Copyright © 2018 Wolters Kluwer Health, Inc.

Relationship between the number of overseas organ transplantation cases and the number of deceased organ donors in South Korea. Doha: Doha, Qatar; DOI, Declaration of Istanbul; IOPO, independent organ procurement organization; KODA, Korea Organ Donation Agency; KOTRY, Korean Organ Transplantation Registry. Reproduced with permission from Ahn HJ, Kim HW, Han M, et al. Changing patterns of foreigner transplants in Korea and overseas organ transplants among Koreans. Transplantation. 2018;102:310–317. 100 Copyright © 2018 Wolters Kluwer Health, Inc.

Ghana (lower-middle-income country): framework for the development of living donor kidney donation

In 2008, a living donor kidney transplantation program was established in Ghana in collaboration with the Transplant Links Community and the Queen Elizabeth Hospital Birmingham, part of University Hospitals Birmingham NHS Foundation Trust–ISN Sister Renal Center. Our model for developing a kidney transplant program involved 3 stages ( Figure 7 ): the pre-transplant stage, crucial in ensuring effective planning and long-term sustainability; and the transplant and post-transplant stages, important for clinical capacity building, patient care, monitoring, and evaluation, which then feed back into the pre-transplant stage to optimize the transplantation process.

Model for kidney transplantation in Ghana. HDU, high-dependency unit; ICU, intensive care unit.

Pre-transplant planning

The decision to undertake living donor kidney donation was based on the youthfulness of patients on dialysis, the cost of HD (beyond the means of most patients), and the opportunity for an improved quality of life. First, a knowledgeable and committed champion was identified to lead, drive, and coordinate the program through effective and ongoing engagement with all stakeholders. 101

The second step involved an assessment of the capacity of the hospital to ensure that it could support kidney transplantation. A checklist was developed to assess infrastructure : personnel, policies, protocols, laboratory support, and medicine availability. This was implemented by a team including heads of departments of medicine, surgery, pharmacy, pathology, and anesthesia. The assessment of clinical capacity included identification of comprehensive protocols for both donor and recipient work-up and immunosuppressant management, including a choice of affordable generic immunosuppressants. Identified key gaps included no legal framework for organ transplantation, a lack of transplantation surgeons, and the nonavailability of protocols and some immunosuppressive drugs.

The third step was the development of a legal and ethical framework for living donor kidney donation. In the absence of a national legal framework for transplantation, hospital management and the MOH decided to adopt the Declaration of Istanbul on organ trafficking and transplant tourism as a means of ensuring best practices. 102 , 103 To work within the principles of the Declaration of Istanbul, only living-related donors were considered. In addition, a transplant ethics committee was established, guided by the UK Human Tissue Act (2004), the World Health Organization Guiding Principles on Human Cell, Tissue and Organ Transplantation, and the Declaration of Istanbul, to independently assess the transplantation process and to avoid coercion and organ trafficking. 104 , 105 , 106 The committee comprised a retired professor of surgery, a priest, a lawyer, a clinical psychologist, and a professor in public health.

The final step was financing . Given the projected costs of a transplantation program, the hospital engaged funders including the National Health Insurance Scheme and the Social Security and National Insurance Trust. The hospital also provided letters to patients to solicit funds for transplantation. The Transplant Links Community raised enough funds to cover the costs of the visiting transplantation team, volunteers who visited during their holidays. The National Kidney Foundation–Ghana raised funds to support medicines and laboratory investigations. The cost of a kidney transplantation was estimated at US$10,000 per transplantation, including pre- and post-transplantation laboratory investigations, hospital admission, both operations (donor and recipient), postoperative management, and a 3-month supply of immunosuppressive drugs. Corporate organizations sponsored transplantation patients to ensure that all patients, even those who could not afford it, were provided for, including ongoing immunosuppressants, which average US$3600 to US$4000 per year.

• (i) Development of local clinical capacity for transplantation : A multidisciplinary clinical team made up of local nephrologists, urologists, anesthetists, clinical pharmacists, and critical care nurses was created. Clinical expertise in kidney transplantation was achieved with periods of training of surgeons and physicians in South Africa and the United Kingdom through ISN fellowship awards.
• (ii) Donor and recipient selection: Recipients along with suitable living donors were selected from dialysis centers. Two local nephrologists applied standard guidelines to evaluate donor and recipient pairs. Donors and recipients were provided with counseling and educational materials on the risks and alternatives available. Materials were provided in English; however, a team of local nurses were able to counsel in the local language. After the medical evaluation, donors and recipients were further evaluated by the transplantation surgeon and the anesthetist. The ethics committee provided an independent assessment and interviewed each pair separately and together. Once the committee was satisfied that the pair were genuinely related, that the donor was not acting under any coercion, and that the Declaration of Istanbul was adhered to, written approval was given to proceed to the transplant stage. Two other nephrologists from the international team reevaluated the donor-recipient pair before surgery.
• (iii) Transplantation procedure and follow-up: The University Hospitals Birmingham NHS Foundation Trust and Transplant Links Community teams made 2 initial visits before the first transplantation and then performed the kidney transplantations on subsequent visits. These visits enabled hands-on training of local surgeons, anesthetists, nurses, and theater technicians. The Ghanaian team adopted the University Hospitals Birmingham NHS Foundation Trust protocols, with minor modifications, for patient management and follow-up pre-, intra-, and postoperation.
• (iv) Monitoring and evaluation of the program involved entering all patients into a database for ongoing follow-up: After the first set of kidney transplantations done in 2008, the donor work-up process was reevaluated and a new donor work-up sheet was designed to reduce the cost of the donor work-up ( Appendix 2 ). Outcome of the transplantation program has been good: in the first 17 transplantations done, there was 100% 1-year patient survival and 91.7% graft survival. 106

ESKD is a global problem and cuts across all sociodemographic differences and cultural context. Despite the diversity in countries discussed here, common themes emerged in the approach to reducing the burden of CKD/ESKD:

• • the importance of screening high-risk populations and multidisciplinary care in slowing the rate of progression of CKD;
• • improving access to KRT options (HD, PD, DD, and living donor transplantation) to all patients (including rural) affected by ESKD;
• • moving toward financially sustainable KRT options; and
• • the recognition of the harm of nephrotoxic drugs.

Countries have made great strides to date in recognizing the importance of and developing strategies to address CKD/ESKD across different income status ( Table 8 ). Future work needs to continue to rely on strong data collection and analysis to identify key risk factors across populations, enact strategies that delay the onset and progression of CKD, increase universal access to appropriate KRT, and use the leverage of international collaboration to strengthen systems around the world ( Figure 8 ). Capitalizing on partnerships that can limit the financial burden on LMIC should continue to be explored. A cohesive collaborative approach among experts around the globe will continue to strengthen the international nephrology community and improve outcomes for patients with CKD/ESKD.

Table 8

Featured strategies of CKD/ESKD care stratified by World Bank economic classification

CKD, chronic kidney disease; ESKD, end-stage kidney disease; KRT, kidney replacement therapy; NGO, nongovernmental organization; NSAID, nonsteroidal anti-inflammatory drug; UHC, universal health coverage.

Strengths, weaknesses, opportunities, and threats (SWOT) analysis of chronic kidney disease (CKD)/end-stage kidney disease (ESKD) strategies .

Publication of this article was supported by the International Society of Nephrology.

DCHH reports grant support from the National Health and Medical Research Council. GGG reports grant support from CloudCath and ICON Clinical Research, Ltd. BLG reports lecture fees from Baxter, Fresenius Medical Care, Sanofi, and Kwoya Kirin and grant support from Baxter and Kwoya Kirin. JD reports consulting fees from the International Society of Nephrology. All the other authors declared no competing interests.

Acknowledgments

This article emerged as an individual product of the International Society of Nephrology’s 2nd Global Kidney Health Summit held in Sharjah, United Arab Emirates, in March 2018 and portions of the material in this document have been published in the full report from the summit (Harris DCH, Davies SJ, Finkelstein FO, et al. Increasing access to integrated ESKD care as part of universal health coverage. Kidney Int. 2019;95:S1–S33 1 ). In addition to the International Society of Nephrology, support of the summit was provided through unrestricted grants from Baxter and B. Braun.

MT was supported by the David Freeze Chair in Health Services Research at the University of Calgary. The Libin Institute at the University of Calgary is the host institution for the Pan American Health Organization/World Health Organization’s Coordinating Centre in Prevention and Control of Chronic Kidney Disease.

The authors thank Drs. Hong Teck Chua, Chwee Choon Tan, and Zaki Morad for assisting with the preparation of the section on Malaysia and Dr. Shang-Jyh Hwang for the section on Taiwan. The authors thank the patients; the donors; Mr. Charles Antwi; Professor Nii Otu Nartey, former Chief Executive Officer of the Korle Bu Teaching Hospital; and the doctors; especially Dr. Dwomoa Adu, Dr. Bernard Morton, Professor Michael Mate Kole, Mr. Andrew Ready; and the Transplant Links Community team who worked together to make transplantation possible in Ghana. The authors also thank Dr. Manar Bushra, Director of the Sudan National Center for Kidney Diseases and Surgery, for the statistics provided.

The views expressed in this commentary are solely the responsibility of the authors and they do not necessarily reflect the views, decisions, or policies of the institutions with which they are affiliated.

Appendix 1 │ Evolutionary pathway of CKD/ESKD integrated care in Taiwan

BNHI, Bureau of National Health Insurance; CKD, chronic kidney disease; DOH, Department of Health; eGFR, estimated glomerular filtration rate; ERA-EDTA, European Renal Association – European Dialysis and Transplant Association; ESKD, end-stage kidney disease; NBHP, National Bureau of Health Promotion; NGO, nongovernmental organization; NHI, National Health Insurance; PD, peritoneal dialysis; TSN, Taiwan Society of Nephrology; USRDS, United States Renal Data System.

Appendix 2 │ Work-up checklist for living donor kidney donation in Ghana

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Drinking Water of Patients With Chronic Kidney Disease—Get the Lead Out

• 1 Division of Urology, Stanford University, Palo Alto, California
• 2 Division of Nephrology, University of California, San Francisco
• 3 Division of Hematology, Stanford University, Palo Alto, California
• Original Investigation Water Lead and Hematologic Toxic Effects in Chronic Kidney Disease John Danziger, MD, MPhil; Joanna Willetts, MS; John Larkin, PhD; Sheetal Chaudhuri, PhD; Kenneth J. Mukamal, MD, MPH; Len A. Usvyat, PhD; Robert Kossmann, MD JAMA Internal Medicine

Of the 3 available chronic dialysis modalities, home hemodialysis is the most uncommon, supporting approximately 2% of patients receiving chronic dialysis in the US vs 12% peritoneal dialysis and 86% in-center hemodialysis. Most patients receiving home hemodialysis currently in the US are prescribed 4 to 5 sessions per week, each lasting 2.5 to 4 hours. 1

This low use of home hemodialysis stands in contrast to multiple surveys of nephrologists who believe that home hemodialysis provides multiple advantages—including better control of volume and uremia in a more gentle fashion—and would often choose this modality for themselves should they develop kidney failure and were unable to receive a transplant. Patients receiving home hemodialysis tend to be younger, at least partly employed, less likely to have diabetes as their cause of kidney failure, and more likely to be White than those receiving in-center hemodialysis. 1

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Polasko AL , Hsu C , Chien M. Drinking Water of Patients With Chronic Kidney Disease—Get the Lead Out. JAMA Intern Med. Published online May 28, 2024. doi:10.1001/jamainternmed.2024.0901

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