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  3. Progress of nations in the organisation of, and structures for, kidney care delivery between 2019 and 2023: cross sectional survey in 148 countries
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Research

Progress of nations in the organisation of, and structures for, kidney care delivery between 2019 and 2023: cross sectional survey in 148 countries

BMJ 2024; 387 doi: https://doi.org/10.1136/bmj-2024-079937 (Published 14 October 2024) Cite this as: BMJ 2024;387:e079937
  1. Ikechi G Okpechi, professor1 2,
  2. Adeera Levin, professor3,
  3. Somkanya Tungsanga, postdoctoral fellow1 4,
  4. Silvia Arruebo, research coordinator5,
  5. Fergus J Caskey, professor6,
  6. Innocent I Chukwuonye, consultant nephrologist7,
  7. Sandrine Damster, research associate director5,
  8. Jo-Ann Donner, programmes coordinator5,
  9. Udeme E Ekrikpo, associate professor8,
  10. Anukul Ghimire, senior registrar9,
  11. Vivekanand Jha, professor10 11 12,
  12. Valerie Luyckx, associate professor13 14 15,
  13. Masaomi Nangaku, professor16,
  14. Syed Saad, data assistant1,
  15. Elliot K Tannor, consultant nephrologist17 18,
  16. Marcello Tonelli, professor9 19,
  17. Feng Ye, statistician1,
  18. Aminu K Bello, professor1,
  19. David W Johnson, professor20 21 22 23
  1. 1Division of Nephrology and Immunology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada
  2. 2Division of Nephrology and Hypertension, University of Cape Town, Cape Town, South Africa
  3. 3Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada
  4. 4Division of General Internal Medicine-Nephrology, Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand
  5. 5International Society of Nephrology, Brussels, Belgium
  6. 6Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK
  7. 7Department of Medicine, Federal Medical Centre, Umuahia, Abia State, Nigeria
  8. 8Department of Internal Medicine, University of Uyo/University of Uyo Teaching Hospital, Uyo, Nigeria
  9. 9Division of Nephrology, Department of Medicine, University of Calgary, Calgary, AB, Canada
  10. 10George Institute for Global Health, University of New South Wales, New Delhi, India
  11. 11School of Public Health, Imperial College, London, UK
  12. 12Manipal Academy of Higher Education, Manipal, India
  13. 13Department of Public and Global Health, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland
  14. 14Renal Division, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA
  15. 15Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa
  16. 16Division of Nephrology and Endocrinology, University of Tokyo Graduate School of Medicine, Tokyo, Japan
  17. 17Department of Medicine, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
  18. 18Renal Unit, Department of Medicine, Komfo Anokye Teaching Hospital, Kumasi, Ghana
  19. 19Canada and Pan-American Health Organization/World Health Organization’s Collaborating Centre in Prevention and Control of Chronic Kidney Disease, University of Calgary, Calgary, AB, Canada
  20. 20Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, QLD, Australia
  21. 21Centre for Kidney Disease Research, University of Queensland at Princess Alexandra Hospital, Brisbane, QLD, Australia
  22. 22Translational Research Institute, Brisbane, QLD, Australia
  23. 23Australasian Kidney Trials Network, University of Queensland, Brisbane, QLD, Australia
  1. Correspondence to: I G Okpechi iokpechi{at}ualberta.ca
  • Accepted 3 September 2024

Abstract

Objective To assess changes in key measures of kidney care using data reported in 2019 and 2023.

Design Cross sectional survey in 148 countries.

Setting Surveys from International Society of Nephrology Global Kidney Health Atlas between 2019 and 2023 that included participants from countries in Africa (n=36), Eastern and Central Europe (n=16), Latin America (n=18), the Middle East (n=11), Newly Independent States and Russia (n=10), North America and the Caribbean (n=8), North and East Asia (n=6), Oceania and South East Asia (n=15), South Asia (n=7), and Western Europe (n=21).

Participants Countries that participated in both surveys (2019 and 2023).

Main outcome measures Comparison of 2019 and 2023 data for availability of kidney replacement treatment services, access, health financing, workforce, registries, and policies for kidney care. Data for countries that participated in both surveys (2019 and 2023) were included in our analysis. Country data were aggregated by International Society of Nephrology regions and World Bank income levels. Proportionate changes in the status of these measures across both periods were reported.

Results Data for 148 countries that participated in both surveys were available for analysis. The proportions of countries that provided public funding (free at point of delivery) increased from 27% in 2019 to 28% in 2023 for haemodialysis, 23% to 28% for peritoneal dialysis, and 31% to 36% for kidney transplantation services. Centres for these treatments increased from 4.4 per million population (pmp) to 4.8 pmp (P<0.001) for haemodialysis, 1.4 pmp to 1.6 pmp for peritoneal dialysis, and 0.43 pmp to 0.46 pmp for kidney transplantation services. Overall, access to haemodialysis and peritoneal dialysis improved, however, access to kidney transplantation decreased from 30 pmp to 29 pmp. The global median prevalence of nephrologists increased from 9.5 pmp to 12.4 pmp (P<0.001). Changes in the availability of kidney registries and in national policies and strategies for kidney care were variable across regions and country income levels. The reporting of specific barriers to optimal kidney care by countries increased from 55% to 59% for geographical factors, 58% to 68% (P=0.043) for availability of nephrologists, and 46% to 52% for political factors.

Conclusions Important changes in key areas of kidney care delivery were noted across both periods globally. These changes effected the availability of, and access to, kidney transplantation services. Countries and regions need to enact enabling strategies for preserving access to kidney care services, particularly kidney transplantation.

Introduction

As the burden of kidney disease continues to grow worldwide,12 significant inequities remain the availability and accessibility of care for patients with kidney disease.3 Chronic kidney disease affects an estimated one in 10 people globally, with a higher prevalence in low-income and lower-middle income countries where more than 50% of the population with chronic kidney disease resides.45 In the United States, approximately one in seven adults (35.5 million people) have chronic kidney disease, and a third of people with diabetes mellitus and a fifth of people with hypertension may also have chronic kidney disease.6 A large systematic review identified large gaps in access to kidney replacement therapies, especially in sub-Saharan Africa and Asia, where up to 91% and 83% of people who needed kidney replacement treatment, respectively, were unable to access it.7

In response to the global challenges posed by the growing burden of chronic kidney disease, the global nephrology community developed a cohesive 10 point roadmap in 2017 to address gaps in care, research, and policy.8 The International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) was set up as part of that plan to routinely provide relevant updates on access to care, health infrastructure, national and regional policies, and research capacity as a way of assessing what has been achieved for chronic kidney disease.8 The first iteration was reported in 2017 and showed that globally, 95% of countries had facilities for haemodialysis, 76% had facilities for peritoneal dialysis, and 75% had facilities for kidney transplantation.9 Subsequently in 2019, a second iteration showed that the numbers were100%, 76%, and 74%, respectively; however, the numbers of centres providing these services were much lower in low income countries and lower middle income countries.3 The third iteration in 2023 used a similar survey instrument as the second, and also showed large gaps in availability of, and access to kidney replacement treatment services between high income and lower income countries.10

The covid-19 pandemic presented important challenges for healthcare systems globally, including interruptions in the delivery of kidney care (predialysis, dialysis, and kidney transplantation services) across countries, especially in low resource nations.1112 Challenges were compounded by workforce availability,12 the supply chain for the delivery of dialysis products,13 trainee education, and the emotional wellbeing of the nephrology workforce and patients,14 along with increased mortality risk in people on dialysis.15 Even though this study was not specifically designed to assess the effect of the pandemic on availability of care, we used serial ISN-GKHA data to assess changes in key domains of kidney care delivery (ie, health financing, workforce, availability of essential medicines and health technologies, access to kidney replacement treatment, health information systems, and policy and advocacy for kidney care) over a four year period that spanned the pandemic.

Methods

The rationale and methods used for the ISN-GKHA project have been previously reported,16 including specific methods and survey instruments adopted in each iteration of the work.3910 Briefly, the work consisted of two components: (1) a global literature review to assess the incidence and prevalence of treated kidney failure and kidney replacement treatment (ie, haemodialysis, peritoneal dialysis, and kidney transplantation) and (2) a multinational survey to evaluate availability, access, funding, health information systems, and advocacy and policy for chronic kidney disease and kidney failure. This survey engaged opinion leaders with knowledge of the status and extent of national kidney care practices in each country. Three leaders were identified from each country to participate in the survey, including a nephrology society leader, a policy maker, and the lead of a national or regional patient representative organisation. In some instances, the country stakeholders had multiple roles (eg, both nephrology leader and policy maker). The survey framework was based on the building blocks for health systems laid out by the World Health Organization (WHO): access to essential medicines and technologies, health systems financing, health service delivery, health workforce, health information systems, and leadership and governance.17 The survey was conducted in English, French, and Spanish. Data from non-English language surveys were later translated in English.

Survey development, validation, and administration

In both surveys, key stakeholders with societies affiliated with the International Society of Nephrology were invited to participate using an electronic link to the survey online portal via REDCap (https://www.redcapcloud.com). Each survey was conducted over a three month period from July to September before the year of publication, ie, 2018 and 2022, respectively. During this period, members of the ISN-GKHA working group and regional and national leaders of the International Society of Nephrology intensively followed-up via email and telephone to ensure complete and timely responses. The surveys were coordinated through the society’s 10 regional boards: Africa, Eastern and Central Europe, Latin America, the Middle East, Newly Independent States (ie, Armenia, Azerbaijan, Belarus, Georgia, Kazakhstan, Kyrgyzstan, Russia, Tajikistan, Turkmenistan, Ukraine, Uzbekistan) and Russia, North America and the Caribbean, North and East Asia, Oceania and South East Asia, South Asia, and Western Europe.

Data handling and reporting

Responses to the French and Spanish surveys were converted to English by certified translators. Data from all individual surveys were subsequently extracted to Microsoft Excel, checked for inconsistencies, missing data, duplicates, cleaned, merged, and then combined into a single file to create the global database for analysis using Stata 17 software (Stata Corporation, 2017). Regional leaders from the society reviewed all collated data, ensuring that they were consistent with their understanding of availability of services in countries in their region and were of high quality. Inconsistencies between respondents from the same country were flagged for the regional board to review. Each regional board from the society clarified any ambiguities or inconsistencies and where these could not be resolved, the respondents were contacted to clarify their responses. Findings were further validated by triangulating with published literature and grey sources of information (eg, government reports and other sources provided by the survey respondents).

Data analysis and definition of key variables

In each survey, the country was used as the unit of analysis using a descriptive statistical approach to summarise responses, which were reported as counts and percentages. The results were then stratified by region as defined by the society and by country income groups as defined by the World Bank: low income countries, lower middle income countries, upper middle income, and high income countries. Estimates at the global, regional, and country income level for continuous variables were presented as median (interquartile range). Country populations in 2021 were used as denominators to assess prevalence data that were reported as per million population (pmp). Standard definitions applied to the components of kidney replacement treatment (haemodialysis, peritoneal dialysis, and kidney transplantation) as well as elements of care delivery based on established frameworks.18 Availability was assessed in terms of whether a service was “generally available” (offered in ≥50% of centres, hospitals, or clinics) or “generally not available” (offered in <50%). Accessibility referred to the proportion of people able to access a given service (eg, dialysis). Quality was defined as the proportion of centres that routinely measured a given indicator (eg, solute clearance) to assess the quality of the service provided. Affordability was determined by the proportion of the treatment cost directly covered by the individual.

We evaluated the results with a focus on identifying key gaps in, and challenges to, the delivery of kidney care according to the Guidelines for Accurate and Transparent Health Estimates Reporting (GATHER) statement.19 The Checklist for Reporting Results of Internet E-Surveys (CHERRIES)20 was used to inform survey development and administration, analysis, and reporting. Respondents were asked to report the number of centres in their countries providing kidney replacement treatment. The overall concentration, by World Bank income group and country, was then computed by dividing the total number of centres by the overall population in millions. Population estimates were obtained from the CIA World Factbook in June 2022. A similar approach was used to measure the prevalence of nephrologists and nephrology trainees, incidences and prevalence of kidney replacement treatment, and availability of kidney replacement treatment centres. Notably, our assessments were confined to countries that participated in both surveys (supplementary table 1). We reported ISN-GKHA 2019 data as before the pandemic and the 2023 data as after the pandemic. Comparisons were limited to survey responses only; literature review data from both iterations were not included in the comparisons. Relative changes were presented, and we used McNemar's test for comparison of dichotomous variables and Wilcoxon matched pairs signed-rank test for comparison of continuous variables. To evaluate the agreement between responses for continuous variables, we calculated the intraclass correlation coefficient, which indicates the level of similarity between responses obtained from both surveys. The level of agreement, as indicated by intraclass correlation coefficient, was categorised as poor (<0.5), moderate (0.51-0.75), good (0.76-0.90), and excellent (0.91-1.00). For categorical variables, we used the (Cohen’s) kappa statistic as a measure of agreement between non-unique raters due to the distinct respondents from country to country. The agreement, as indicated by kappa, was categorised as poor (< 0), slight (0-0.20), fair (0.21-0.4), moderate (0.41-0.60), substantial (0.61-0.80), and almost perfect (0.81-1.00).21 A P value of less than 0.05 was taken as significant.

Patient and public involvement

The design of the project was led by nephrologists and patient care organisations were involved in the development of the survey instrument. Individual patient data were not used in both iterations of the ISN-GKHA from which data for this study were obtained. Furthermore, healthcare policy makers (nephrology society leaders and kidney care administrators) participated in providing relevant data for their countries.

Results

Demographic features of countries included in the analysis

Overall, data for 148 countries that participated in both surveys were available for analysis. Countries that participated in 2019 but not 2023 (n=12), or new countries that participated in 2023 that did not participate in 2019 (n=19), were excluded from the analysis (supplementary table 1). The same participants provided responses to both surveys in 82 (55%) countries with mostly significant levels of agreement identified for responses obtained across assessed survey domains (supplementary table 2).

Changes in funding for kidney care

Data for changes on funding for kidney replacement treatment were available from 141 countries (table 1). Overall, the proportion of countries where haemodialysis was publicly funded and free at point of delivery increased from 27% in 2019 to 28% in 2023. This proportion reduced from 21% to 18% in upper middle income countries and from 19% to 0% in low income countries but increased in high income countries from 40% to 55% (P=0.046). However, countries where haemodialysis was reimbursed through private funds and solely out-of-pocket did not change globally, but did increase in Africa from 11% to 17% and also increased in low income countries from 13% to 19% (table 1). Similarly, the proportion of countries that covered peritoneal dialysis through public funding that was free at the point of delivery increased from 23% to 28% globally. However, this decreased in some regions, including Africa (11% to 9%), the Middle East (36% to 27%), Newly Independent States and Russia (43% to 29%), and Oceania and South East Asia (20% to 7%). The proportions of countries where solely out-of-pocket payment method was used for peritoneal dialysis stayed the same across all country income groups. However, this proportion decreased from 13% to 6% in Eastern and Central Europe (table 1).

Table 1

Funding strategy of healthcare system for kidney replacement treatment (and medications) in 2019 and 2023

View this table:

The proportion of countries where reimbursement for the costs of kidney transplantation and medications were through public funds and free at point of delivery increased globally (31% to 36%). This proportion did not change in Africa, the Middle East, and the Oceania and South East Asia region. Globally, countries where payments for kidney transplantation and medications were through out-of-pocket methods came down from 8% to 6%; this proportion reduced from 6% to 0% in Latin America and from 36% to 0% in the Middle East region (P=0.046) (table 1). Funding for non-dialysis chronic kidney disease care, vascular access surgery creation and insertion, peritoneal catheter insertion, and kidney transplantation surgeries are shown in supplementary tables 3-7.

Changes in the availability of health technologies for kidney care

Globally, the prevalence of haemodialysis centres increased, rising from 4.4 pmp to 4.8 pmp (P<0.001) (fig 1). Increases were observed across most regions, except the Middle East where there was a decrease from 3.8 pmp to 3.3 pmp. This proportion also decreased in high income countries (8.7 pmp to 8.6 pmp) but increased across other income levels: 0.18 pmp to 0.31 pmp in low income countries, 1.3 pmp to 1.7 pmp (P<0.001) in lower middle income countries, and 4.7 pmp to 5.4 pmp (P<0.001) in upper middle income countries. The overall prevalence of peritoneal dialysis centres increased from 1.4 pmp to 1.6 pmp. Peritoneal dialysis centre prevalences decreased in Eastern and Central Europe (2.3 pmp to 2.0 pmp), the Middle East (0.8 pmp to 0.7 pmp), North and East Asia (1.9 pmp to 1.3 pmp), and Oceania and South East Asia (2.2 pmp to 1.5 pmp). With respect to country income groups, peritoneal dialysis centres only decreased in low income countries (0.09 pmp to 0.06 pmp) but increased across other income levels: 0.17 pmp to 0.22 pmp in lower middle income countries, 0.8 pmp to 1.1 pmp in upper middle income countries, and 2.3 pmp to 2.5 pmp in high income countries (fig 1). Globally, centres where kidney transplantation was available increased from 0.4 pmp to 0.5 pmp. Regionally, these centres only increased in Western Europe (0.5 pmp to 0.6 pmp) (fig 1).

Fig 1
Fig 1

Availability of haemodialysis, peritoneal dialysis, and kidney transplantation centres by International Society of Nephrology regions and World Bank groups between 2019 and 2023. KRT=kidney replacement treatment; NIS=Newly Independent States; OSEA=Oceania and South East Asia; pmp=per million population

Globally, availability of a functioning vascular access (arteriovenous fistula or arteriovenous graft) increased from 17% to 23% as did tunnelled catheters for dialysis initiation, from 13% to 17%, (supplementary table 8). Availability of arteriovenous fistula reduced in Eastern and Central Europe (44% to 25%), Latin America (12% to 6%), and upper middle income countries (18% to 12%). However, the proportion of countries in which tunnelled catheters were available to initiate dialysis decreased in Africa (18% to 6%) and in low income countries (13% to 0%). Availability of temporary catheters for dialysis initiation decreased globally from 46% to 43% and also decreased in the Middle East (64% to 36%), Newly Independent States and Russia (43% to 29%), North America and Caribbean (43% to 14%), Oceania and South East Asia (40% to 27%), and South Asia (80% to 40%) regions (supplementary table 8).

Changes in quality and availability of diagnoses and treatment

Overall, the proportion of countries where haemodialysis was offered three times weekly (three to four hours per session) increased from 77% to 83%. This proportion increased in Africa (43% to 54%), Latin America (89% to 100%), Newly Independent States and Russia (86% to 100%), North America and the Caribbean (57% to 100%), and South Asia (43% to 57%) (fig 2). Overall, the proportion of countries in which adequate peritoneal dialysis (ie, three to four exchanges per day or equivalent cycles on automated peritoneal dialysis) was offered increased from 60% to 61%. Regions that had an increase in the proportion of countries that offered adequate peritoneal dialysis included North America and the Caribbean (43% to 71%), Latin America (67% to 83%), and Africa (14% to 17%). Overall, countries with capacity for provision of adequate kidney transplantation (ie, provision of appropriate immunosuppression and anti-rejection treatments) did not change and only increased in Latin America (83% to 94%), North America and the Caribbean (57% to 71%), and the North and East Asia region (83% to 100%) (fig 2).

Fig 2
Fig 2

Quality of kidney replacement treatment by International Society of Nephrology regions changes noted between 2019 and 2023. Quality indicated by haemodialysis service based in a centre of adequate frequency (treatment three times a week for three or four hours), peritoneal dialysis exchanges of adequate frequency (three to four per day or equivalent cycles on automated peritoneal dialysis), and appropriate immunosuppression and anti-rejection treatment in kidney transplantation. NIS=Newly Independent States; OSEA=Oceania and South East Asia

We show the quality of outcomes reporting of haemodialysis, peritoneal dialysis, and kidney transplantation, including reporting of blood pressure, small solute clearance, haemoglobin concentrations, bone mineral markers, technique survival (ie, how long a patient continues peritoneal dialysis before switching to haemodialysis or dying), patient survival, and allograft survival, are shown in supplementary tables 9-11. We evaluated changes in diagnostic and treatment capacity for kidney failure complications, including anaemia, mineral bone disease, and electrolyte disorders (fig 3). Regarding diagnosis and treatment of anaemia, overall increases were reported for measurement of iron parameters (75% to 80%), treatment with oral iron (98% to 100%), treatment with parenteral iron (83% to 85%), and availability of erythropoietin stimulating drugs (84% to 88%) (fig 3).

Fig 3
Fig 3

Availability of the routine assessment and treatment of anaemia, mineral bone disease, and electrolyte disorders by World Bank groups between 2019 and 2023

Globally, the capacity to measure serum calcium concentrations increased from 92% to 96% while capacity to measure serum phosphorus increased from 87% to 92% (P=0.046) (fig 3). Overall, availability of calcium based phosphate binders increased from 88% to 92%. Treatment with non-calcium based phosphate binders increased from 49% to 55% and remained available in all countries in North and East Asia and Western Europe in both periods (fig 3). Overall availability of cinacalcet increased from 39% to 50% (P=0.001), did not change in low income countries, and increased in lower middle income countries (5% to 16%; P=0.046), upper middle income countries (15% to 35%; P=0.035), and high income countries (86% to 93%; P=0.046).

Overall, capacity to measure serum electrolytes (eg, sodium, potassium, and bicarbonate) increased from 95% to 97% and increased in low income countries (69% to 75%) and in lower middle income countries (95% to 97%). Availability of potassium exchange resins increased from 64% to 70% and oral sodium bicarbonate increased from 75% to 82% (fig 3). Availability of potassium exchange resins only increased significantly in low income countries (25% to 50%; P=0.046).

Changes in access to kidney replacement treatment

Globally, the proportions of countries in which a majority (>50%) of their national populations were able to access kidney treatment increased from 72% to 74% for haemodialysis and from 4% to 6% for peritoneal dialysis but decreased from 30% to 29% for kidney transplantation (fig 4). Countries where more than 50% of people with kidney failure were able to access haemodialysis remained the same in the North America and the Caribbean, Oceania and South East Asia, and Western Europe regions, and increased in the Africa (34% to 40%), Eastern and Central Europe (94% to 100%), the Middle East (82% to 100%), and North and East Asia (83% to 100%) regions. Similarly, countries where more than 50% of people with kidney failure were able to access peritoneal dialysis (ie, start dialysis with peritoneal dialysis) increased in Africa (0% to 6%), Oceania and South East Asia (0% to 7%), and Western Europe (0% to 10%), decreased in Newly Independent States and Russia (20% to 0%), and remained the same across the remaining regions. Although the proportion of countries reduced in which the majority of people with kidney failure were able to access kidney transplantation, increases were reported in Africa (3% to 6%), Latin America (17% to 22%), and Western Europe (60% to 85%). Only high income countries reported an increase in the proportion of countries with access to kidney transplantation (55% to 56%); this proportion was reduced in lower middle income countries (11% to 3%) and remained the same in low income countries and upper middle income countries (fig 4).

Fig 4
Fig 4

Accessibility to kidney replacement treatment (KRT) by International Society of Nephrology regions and World Bank groups between 2019 and 2023. Accessibility was assessed as >50% of national population of kidney failure patients able to access haemodialysis, able to start peritoneal dialysis, and able to receive kidney transplantation. NIS=Newly Independent States; OSEA=Oceania and South East Asia; PMP=per million population

Changes in availability of workforce for kidney care

Overall, the median prevalence of nephrologists increased from 9.5 pmp to 12.4 pmp (P<0.001). The prevalence of nephrologists reduced in Eastern and Central Europe (26.0 pmp to 24.8 pmp) and in North America and the Caribbean region (18.1 pmp to 18.0 pmp) (fig 5). Nephrologist prevalence increased across all income levels: in low income countries (0.26 pmp to 0.30 pmp), lower middle income countries (1.3 pmp to 1.8 pmp; P<0.001), upper middle income countries (9.3 pmp to 12.5 pmp; P=0.008), and high income countries (25.2 pmp to 25.6 pmp; P=0.019).

Fig 5
Fig 5

Changes in the distribution of nephrologists between 2019 and 2023 by International Society of Nephrology regions and World Bank income groups. NIS=Newly Independent States; OSEA=Oceania and South East Asia; PMP=per million population

The percentage of countries that reported a shortage of nephrologists decreased overall from 68% to 62% (supplementary table 12). Although Africa did not have a change in number of countries that reported shortages of nephrologists, it still had the highest proportion of countries with shortages of nephrologists (86%). No significant changes were noted in reporting of shortages of nephrologists across all regions and country income levels (supplementary table 12).

Changes in health information systems for kidney diseases

Overall, availability of all types of registries for kidney diseases increased (supplementary table 13). The number of countries with registries for non-dialysis chronic kidney disease increased from 13% to 19%. All the countries in Newly Independent States and Russia and Oceania and South East Asia that had a non-dialysis chronic kidney disease registry in 2019, reported not having them in 2023. Dialysis registries increased from 67% to 68%. Regionally, only Africa recorded a reduction of dialysis registries (44% to 32%) with low income countries and lower middle income countries also recording reductions (supplementary table 13). While kidney transplantation registries increased globally from 60% to 62%, reductions were reported in Africa (15% to 12%), in low income countries (7% to 0%), and high income countries (91% to 89%). Variability in acute kidney injury registries was also noted across regions and country income levels, although none statistically significantly.

Changes in national policies and strategies for chronic kidney disease care

Overall, the proportion of countries with a national strategy for non-communicable diseases increased from 47% to 58% (P=0.016). Significant increases were only reported in Africa (35% to 62%; P=0.003) and in lower middle income countries (36% to 61%; P=0.013) (supplementary table 14). The proportion of countries with strategies for improving the care of people with chronic kidney disease increased overall from 22% to 25% while those with a strategy specific for chronic kidney disease increased from 36% to 37%. Overall, the proportion of countries in which chronic kidney disease was recognised as a health priority reduced from 52% to 50% while countries where kidney failure and kidney replacement treatment were recognised as a health priority increased from 55% to 65% (supplementary table 15). Variabilities in regional and country income level were also noted.

Barriers to optimal kidney care delivery

Overall, we noted increases in the proportion of countries that identified geographical factors (55% to 59%), availability of a nephrologist (58% to 68%; P=0.043), and lack of political will and enabling policies (46% to 52%) as specific barriers to optimal delivery of kidney care with significant variations noted across regions and country income levels (supplementary table 16).Of note, the proportion of countries that identified economic factors (eg, limited funding or poor reimbursement systems) as a barrier to optimal kidney care delivery reduced (64% to 59%).

Discussion

The primary focus of the ISN-GKHA is to routinely update the status, at a global, regional, and country level, of the capacity for kidney care delivery across domains of health systems building blocks. All iterations have described the extent of available services and important gaps, especially in low resource countries, in accessing kidney care services. This study leveraged 2019 and 2023 ISN-GKHA data to describe changes across core domains.

Principal findings of this study

Our study documents change in kidney care availability, accessibility, and funding in countries and regions over a four year period (in 2019 and 2023). To our knowledge, this study is the first to provide a comprehensive report of such changes in the organisation, structures, and care delivery processes for people living with kidney disease across different metrics of kidney care in countries in all major regions of the world. On a global scale, this study identified the following: (1) increased proportions of countries in which haemodialysis, peritoneal dialysis, and kidney transplantation were publicly funded and free at the point of delivery, (2) increased prevalences of haemodialysis and peritoneal dialysis centres, (3) more countries with improved quality of delivered haemodialysis and peritoneal dialysis with no change in quality of kidney transplantation, (4) increased access to haemodialysis and peritoneal dialysis for populations with kidney failure, (5) an overall increase in the prevalence of nephrologists, (6) an increase across all types of kidney registries, and (7) an increase in strategies specific to chronic kidney disease for improving kidney care.

Comparisons with previous studies

No studies have provided global trends across WHO’s six health systems building blocks for kidney care (ie, service delivery; health workforce; health information systems; medical products, vaccines, and technologies; health financing; leadership and governance). However, deductions can be made from studies and reports that have projected trends in availability and access to treatment and capacity for funding kidney care. For example, in 2010, 2.6 million people accessed kidney replacement treatment worldwide out of a possible 4.9-9.7 million who were in need, suggesting at least 2.3 million premature deaths due to limited access to kidney replacement treatment.7 Projections show that fewer people (5.4 million of an estimated 14.5 million) will be able to access kidney replacement treatment by 2030, especially in low income countries and countries in Asia and Africa. This disparity in access to treatment shows the need for implementation of cost effective strategies. Even though our study showed increased access to dialysis, the proportion of countries in low income countries where dialysis can be readily accessed remained too low to be able to meet the burden of kidney diseases in these regions (from 13% to 31% v 98% to 100% in high income countries).

An estimated 8-37% of total domestic health expenditure would be required to address universal access to dialysis in three countries in Africa.22 This figure suggests that the opportunity costs of wholesale dialysis expansion in Africa are too great to be easily justifiable from a population health perspective, a region in which more than 50% of countries use public funds for dialysis reimbursement.23 Another study from Africa reported mortality exceeding 90% within 12 months in people with incident kidney failure who were treated with haemodialysis, mainly due to the inability to pay for the cost of care.24 Unfortunately, our study only showed a small increase in number of countries in which haemodialysis was fully funded through public funds (27% to 28%) with major reductions noted in low income countries (19% to 0%). Additionally, countries that used only an out-of-pocket payment system increased in low income countries (13% to 19%) (table 1). While our study showed a marginal increase in global government funding for dialysis, public funding reduced or was completely removed in low resource settings. Healthcare funding reforms are urgently needed in many countries, especially in poorer countries, to improve and allow equitable access to kidney care. Such reforms will likely involve processes to increase government funding for health, strategies that lead to an overall reduction of the cost of treatments, disease prevention policies, and an evaluation of economic and societal return on such investments, particularly in low income countries.25

Interpretation and policy implications

Improved healthcare funding is an important component of a well functioning healthcare system for optimal care delivery and better outcomes.26 Kidney replacement treatment is costly and its high cost and excessive out-of-pocket payment methods in many countries represent major hurdles to accessing high quality kidney care, leading to poor outcomes in people with kidney failure.2427 Even though our study showed an increase in the proportion of countries that offer kidney replacement treatment that is publicly funded and free at point of delivery, the categories of countries in which these increases were reported were mainly high income countries. In low and lower middle income countries where the burden of kidney disease is high, the proportion using public funds to reimburse kidney replacement treatment was reduced and countries relying on private payment methods increased.

Although sustained pressure should be put on governments to increase public funding for kidney replacement treatment, the focus should be on public funding of haemodialysis because this modality of kidney replacement treatment is most common,28 and is often the only modality in low or lower middle income countries.29 By contrast, the funding for peritoneal dialysis is often government funded and free at the point of delivery. Specific countries, including Hong Kong, Taiwan, China, Mexico, and Guatemala, have adopted a policy to use peritoneal dialysis first or to favour peritoneal dialysis.30 This strategic choice could account for the higher percentage of the national population with access to peritoneal dialysis, particularly in North and East Asia, and an increasing number of countries in North and East Asia, Latin America, and Western Europe that provide peritoneal dialysis with government funding.

Furthermore, pragmatic approaches need to address the areas in which low availability of public funding exists, particularly in low income countries and lower middle income countries. Such approaches might include mechanisms for early disease identification, treatment of chronic kidney disease and risk factors by increasing awareness through education, early referral to nephrology, and education on avoidance of nephrotoxins. Additionally, approaches include initiation of medications that slow disease progression and reduce excess morbidity and mortality.31 Efforts should not only be geared towards increasing availability of, and access to, kidney replacement treatment, but also towards the quality of delivered kidney replacement treatment and availability of shared decision making for conservative kidney management.32 Africa, Oceania and South East Asia, and South Asia had an increase in the proportion of countries able to provide adequate haemodialysis, however, the goal should be to ensure that almost all countries in every region have capacity to deliver high quality care. With this improvement, patients would have an improved quality of life, reduced complications, and reduced morbidity and mortality.33 Availability, although increased, were still limited, particularly in low income countries and lower middle income countries. The overall rate of access to kidney transplantation slightly decreased, especially in lower middle income countries. This aligns with earlier reports highlighting a decline in the rate of kidney transplantation during the pandemic period in 2020, particularly for living donor kidney transplantation. Enhancing access to kidney transplantation is essential because this treatment modality is the most effective.

Availability of essential medicines is crucial to promote health, slow disease progression, treat complications of kidney failure, and successfully implement preventive measures. Several medications and diagnostic tests required to identify common complications of kidney failure are scarcely available in many countries despite an increase in the proportion of countries offering them. For instance, although hyperparathyroidism is a known complication of kidney failure, only 25% of low income countries had capacity to routinely offer parathyroid hormone measurement. Additionally, less than a quarter of low income countries had access to more potent treatment for hyperparathyroidism such as non-calcium based phosphate binders or cinacalcet (fig 3). The availability of laboratory tests and treatments for common complications like anaemia and electrolyte disorders followed a similar trend. These complications are associated with cardiovascular outcomes and mortality, contributing to poor outcomes.

Healthcare services cannot be maintained or optimally delivered in the absence of a trained and effective workforce. Previous ISN-GKHA iterations have shown that nephrologists primarily bear responsibility for the medical care of people with kidney failure in up to 92% of countries.3 Even though the prevalence of nephrologists increased across all income categories within this period, the prevalence in several countries, especially in low income countries and lower middle income countries, is critically low. Even though nephrologist prevalence increased in low income countries (0.26 pmp to 0.30 pmp), the new prevalence was sixfold lower than in lower middle income countries, more than 40-fold lower than in upper middle income countries, and more than 85-fold lower than in high income countries (fig 5). Efforts to increase and improve the nephrology workforce have been published in several studies.263435 Opportunities to train new nephrologists and implement strategies to retain those already practicing nephrology should be sought, especially in low income countries and lower middle income countries.34 Implementing strategies to expand other nephrology specialists, including dialysis nurses and technicians, interventional surgeons and radiologists, and transplant coordinators, should also be pursued through task shifting and alignment of workforce training and distribution according to local priorities.36

While we observed increased availability of kidney registries and national strategies for non-communicable diseases, the proportion reduced for countries in which chronic kidney disease was recognised as a health priority. Identification of how these changes affect availability and quality of kidney care in each region is needed and policy makers need to be informed about how such policies affect access to care and outcomes of people with kidney failure. For instance, although the proportion of countries in Africa that recognised chronic kidney disease and its treatment as a health priority reduced, recognition of kidney failure and its treatment as a health priority increased. What this means in terms of availability of measures to retard chronic kidney disease progression versus availability of kidney replacement treatment services in the region will need to be further assessed.

Strengths and weaknesses of this study

Our study has a few limitations. Both iterations of the ISN-GKHA work used survey questionnaires, which is a method limited by subjectivity in responses depending on respondents’ knowledge, expertise, and perceptions. This potential social desirability bias might have affected accurate representation of the status of services in their countries. However, to overcome this effect, we worked closely with the International Society of Nephrology’s regional boards to review responses to ensure they accurately represented the status of care in all countries within their region. Additionally, for some countries, different respondents participated in both surveys meaning that there might have been some inconsistencies in reporting of some values. This difference could have been due to changes in national nephrology leadership or retirement from service of the previous respondents. However, given that respondents of the surveys were national and regional nephrology leaders, we are confident that the data provided adequately reflected the status of care in each country.

Despite these limitations, the study had important strengths, including the use of a validated framework for assessing care capacity for chronic diseases, based on the WHO health system building blocks. The study also represented an important opportunity to track progress at the national, regional, and country income level towards achieving universal health coverage, providing essential medicines and health technologies, increasing workforce in nephrology, and developing and implementing policies for improved care of kidney diseases.

Conclusion

This study provides important insights into changes in the organisation, structures, and delivery processes for kidney care across world regions and countries stratified by country income levels over a five year period. Most importantly, we highlighted positive changes (representing progress made across countries regarding kidney care structures) in the use of public funding, availability of kidney replacement treatment centres and workforce, accessibility, and recognition of kidney failure and kidney replacement treatment as health priorities. These changes are important when viewed from an angle of global health advocacy efforts.37 Although encouraging improvements were noted in low resource nations, such changes were often minimal and need to be sustained with substantial continued improvements. As the three leading nephrology organisations stressed in a recent consensus statement,38 globally recognising kidney disease as a major driver of mortality related to non-communicable diseases will lead efforts to reduce global chronic kidney disease burden and help save lives. The evidence that kidney disease has become recognised as a public health issue will become apparent when government funding for care, availability, access to services and essential medicines, and workforce have significantly increased, especially in low resource countries where gaps are largest. Our findings reiterate the importance of addressing specific local and regional hurdles to improve kidney care and outcomes as well as for guiding policy makers on areas of greatest local needs. However, significant changes across all domains may still take several decades to happen.

What is already known on the topic

  • Several studies, mainly from high income countries, have provided information on trends in some aspects of chronic kidney disease and kidney failure care

  • Availability and access to core aspects of kidney care is much higher in high income than lower income countries

  • No multinational studies involving countries across different income levels have assessed changes in key metrics of World Health Organization’s health systems building blocks for kidney care

What this study adds

  • Globally, key aspects that determine delivery of quality kidney care, eg, availability of services and public funding, showed variable degrees of changes across country income levels and world regions

  • Countries need to develop and implement strategies for preserving and improving access to kidney care services, particularly kidney transplantation

  • Governments in low income countries and lower middle income countries need to increase the use of public funds to cover all aspects of kidney care

Ethics statements

Ethical approval

The project was approved by the University of Alberta’s research ethics committee (protocol No PRO00063121) and all survey participants provided informed consent. Individual patient data were not used in this study.

Data availability statement

ISN-GKHA 2019 data are available from doi:10.1136/bmj.l5873 (PMID: 31672760). ISN-GKHA 2023 data are available from: doi:10.1016/S2214-109X(23)00570-3 (PMID: 38365413). Full data are available from the corresponding author at iokpechi{at}ualberta.ca

Acknowledgments

We thank the International Society of Nephrology’s Executive Committee, especially Executive Director Charu Malik, regional leadership, and Affiliated Society leaders at the regional and country levels for their help with the ISN-GKHA. We also thank the Alberta Kidney Disease Network staff for aiding with data analysis.

Footnotes

  • Contributors: IGO, AL, SD, AKB, and DWJ conceptualised the study and designed and developed the method. IGO, AL, SA, SD, JD, FY, AKB, and DWJ conducted the research and investigation process and were responsible for the project administration. IGO, AL, SA., SD, JD, SS, FY, AKB, and DWJ supervised the study. FY was responsible for the formal analysis of the project. IGO, AL, ST, SA, FJC, IIC, SD, JD, UEE, AG, VJ, VL, MN, SS, EKT, MT, FY, AKB, and DWJ wrote the original draft of the manuscript. IGO, AL, ST, SA, FJC, IIC, SD, JD, UEE, AG, VJ, VL, MN, SS, EKT, MT, FY, AKB, and DWJ reviewed and edited the final manuscript. Each author contributed important intellectual content during manuscript drafting or revision and accepted overall accountability for the work. AKB and DWJ are both co-chairs for the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) and co-senior authors for this manuscript. IGO is the guarantor of the study. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.

  • Funding: This work was supported by the International Society of Nephrology (grant RES0033080 to the University of Alberta). The International Society of Nephrology provided administrative support for the design and implementation of the survey and data collection activities. The authors were responsible for data management, analysis, and interpretation, as well as manuscript preparation, review, and approval, and the decision to submit the manuscript for publication.

  • Competing interests: All authors have completed the ICMJE uniform disclosure form at www.icmje.org/disclosure-of-interest/ and declare: funding support for this project from the International Society of Nephrology (grant RES0033080 to the University of Alberta); ST reports fellowship grants from the International Society of Nephrology-Salmasi Family and the Kidney Foundation of Thailand, outside the submitted work. SA reports personal fees from The International Society of Nephrology, outside the submitted work. SD reports personal fees from The International Society of Nephrology, outside the submitted work. JD reports personal fees from The International Society of Nephrology, outside the submitted work. VJ reports personal fees from GSK, Astra Zeneca, Baxter Healthcare, Visterra, Biocryst, Chinook, Vera, and Bayer, paid to his institution, outside the submitted work. VAL reports royalties from Elsevier, consulting fees from the World Health Organization, travel support from the European Renal Association and International Society of Nephrology, and leadership role in Advocacy Working Group of the International Society of Nephrology, outside the submitted work. MN reports grants and personal fees from KyowaKirin, Boehringer Ingelheim, Chugai, Daiichi Sankyo, Torii, Japan Tobacco, Mitsubishi Tanabe, grants from Takeda and Bayer, and personal fees from Astellas, Akebia, AstraZeneca, and GSK, outside the submitted work. AKB reports other (consultancy and honoraria) from AMGEN Incorporated and Otsuka, other (consultancy) from Bayer and GSK, and grants from Canadian Institute of Health Research and Heart and Stroke Foundation of Canada, outside the submitted work; he is also Associate Editor of the Canadian Journal of Kidney Health and Disease and Co-chair of the ISN-Global Kidney Health Atlas. DWJ reports consultancy fees, research grants, speaker’s honoraria and travel sponsorships from Baxter Healthcare and Fresenius Medical Care, consultancy fees from Astra Zeneca, Bayer, and AWAK, speaker’s honoraria from ONO and Boehringer Ingelheim & Lilly, and travel sponsorships from ONO and Amgen, outside the submitted work. He is also a current recipient of an Australian National Health and Medical Research Council Leadership Investigator Grant, outside the submitted work. All other authors have nothing to declare.

  • Transparency: The corresponding author (IGO) affirms that this manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned and registered have been explained.

  • Dissemination to participants and related patient and public communities: Findings from this study will be disseminated to relevant nephrology groups through the platform of the International Society of Nephrology. We will also share the findings with the general public through various channels, such as webinars, mainstream media outlets, and social media platforms. Additionally, this work will be presented at leading international scientific gatherings, such as the annual meetings of the International Society of Nephrology, regional and country level nephrology groups, the European Renal Association, and the American Society of Nephrology, allowing for further discussion and engagement within the scientific community.

  • Provenance and peer review: Not commissioned; externally peer reviewed.

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