Introduction

Universal health coverage (UHC) allows for all individuals to receive the quality health services that they need, when and where they need it, and is one of the United Nations Sustainable Development Goals [1]. Central to achieving this goal is the existence of health systems that are appropriately financed and structured to allow a skilled workforce with the medications and tools needed to provide equitable care to everyone, regardless of environmental, political, or social upheavals.

Kidney failure is a significant healthcare burden due to the high costs of care and its substantial impact on quality of life, including the burden of lifelong kidney replacement therapies (KRT; hemodialysis [HD], peritoneal dialysis [PD], and kidney transplantation [KT]). Vulnerable populations are at increased risk of developing kidney disease and also have several challenges accessing kidney care [2]. These populations may be vulnerable for several reasons, including long-standing or acute environmental factors, the presence of comorbidity, humanitarian emergencies or as a result of social determinants such as poverty, education, age, systemic discrimination, or political conflicts [3, 4].

The International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) is a multinational initiative that assesses the availability, accessibility, and affordability of kidney care using a framework of the World Health Organization UHC domains, including service delivery, health workforce, information systems, financing, leadership, and medicines and medical products. In this study, we used data from the ISN-GKHA [5] to report the availability and accessibility of KRT to vulnerable populations, defined as children, the elderly, those with housing insecurities, racial/ethnic minorities, displaced people, and refugees.

Methods

The 2023 ISN-GKHA is an international project that describes the global and regional capacity to provide care to people with kidney disease (chronic kidney disease [CKD] and kidney failure). A full description of methodologies has been published [5]. In brief, two strategies were used to obtain country-level data on kidney care capacity: an in-depth literature review of published data, grey literature, kidney registries, and databases, and a multinational, cross-sectional, online survey of opinion leaders. For this study, only survey data were utilized.

Results

Identification of vulnerable populations

The healthcare systems in 70 (43%) countries had no mechanisms in place to identify vulnerable populations (specifically people with housing insecurity, racial or ethnic minorities, people living in poverty, and people affected by food insecurity). In four ISN regions, more than half of the countries did not have a system for identifying vulnerable populations: Africa (n = 20; 51%), Eastern and Central Europe (n = 10; 63%), the Middle East (n = 7; 64%), and South Asia (n = 5; 71%). The proportion of countries without a national system to identify vulnerable populations was highest in LICs (n = 11; 61%) and reduced with increasing country income levels (Table 1).

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Table 1. Availability of systems for identifying vulnerable populations stratified by ISN region and World Bank income group (N, %).

https://doi.org/10.1371/journal.pgph.0004086.t001

Disparities in access to care for kidney failure and KRT between children and adults

Country respondents were asked to indicate whether there were differences between the end stage kidney disease (ESKD) care and KRT services available to children, compared to adults, in their respective countries and whether the access to these services were more or less available to children than adults, or not available at all to either group (S1 Table). Overall, variation in care delivery for kidney failure between children and adults was reported from 55 (33%) countries. This variation ranged from 13% (n = 2) in Eastern and Central Europe to 67% (n = 4) in North and East Asia. Variation was highest in LICs (n = 9; 45%) amongst country income categories (Fig 1A). Similarly, overall variation in access to KRT between children and adults was reported in 69 (42%) countries (Fig 1B). Across ISN regions, such variations ranged from 19% (n = 3) in Eastern and Central Europe to 61% (n = 11) in OSEA and were higher in LICs (n = 10; 50%) and LMICs (n = 24; 53%) than in other country income categories (Fig 1B).

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Fig 1. Variation in pediatric and adult care, by ISN region and World Bank income group.*

(A) Variation in kidney failure care between children and adults; (B) Variation in KRT between children and adults. *Values represent the absolute number of countries in each category expressed as a percentage of total number of countries. Abbreviations: ISN–International Society of Nephrology; KRT–kidney replacement therapy; NIS–Newly Independent States; OSEA–Oceania and South East Asia.

https://doi.org/10.1371/journal.pgph.0004086.g001

Overall, HD was more accessible to adults than children in 46/62 (74%) countries and was available to adults while being unavailable to children in 12/62 (19%) countries. In Africa, 7 (39%) countries reported HD access to adults and not to children, while a third of countries in North America and the Caribbean (n = 2; 33%) had similar reporting (S2 Table). Across all ISN regions and country income groups, adults had more access to HD than children (Fig 2A). Similar to HD, in more than half of countries where PD was available, more adults than children had access to chronic PD (n = 28; 53%). In all countries in the Middle East and in NIS and Russia, children had more access to PD than adults, while in some countries in Africa (n = 2; 15%), North and East Asia (n = 1; 33%), and OSEA (n = 1; 13%), access to PD was available to children but not to adults (Fig 2B and S3 Table). Country income group variations in access to PD between adults and children were observed. Children had less access to KT than adults in 43/54 (80%) countries. A minority of countries in the ISN Latin America (n = 3; 27%), North America and the Caribbean (n = 2; 40%), OSEA (n = 1; 11%), and Western Europe (n = 2; 40%) regions reported that children had more access than adults (Fig 2C and S4 Table). Only countries in Africa (n = 3; 23%), representing 2 (33%) LICs and 1 (5%) LMIC, reported KT access to adults and not to children (S4 Table). Several barriers leading to disparities in care were identified from the qualitative responses provided in the survey (S5 Table). These included healthcare funding, access to KRT services, and the availability of pediatric-specific resources.

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Fig 2. Variations in access to kidney replacement therapies between adults and children, by ISN region and World Bank income group.*

(A) Variation in hemodialysis access; (B) Variation in peritoneal dialysis access; (C) Variation in kidney transplant access. *Values represent absolute number of countries in each category expressed as a percentage of total number of countries. Abbreviations: ISN–International Society of Nephrology; NIS–Newly Independent States; OSEA–Oceania and South East Asia.

https://doi.org/10.1371/journal.pgph.0004086.g002

Pediatric nephrology workforce

Overall, the median prevalence of pediatric nephrologists was 0.69 [IQR: 0.03–1.78] per million population (pmp) (Table 2). ISN Eastern and Central Europe (2.41 pmp [IQR: 1.65–2.71]) and North and East Asia (2.33 pmp [IQR: 0.57–4.24]) regions had the highest prevalences of pediatric nephrologists while Africa (0.05 pmp [IQR: 0.00–0.15]) and South Asia (0.07 pmp [IQR: 0.00–0.19]) had the lowest. The prevalence of pediatric nephrologists increased with increasing country income levels; HICs had more than a 50-fold higher prevalence than LICs. More than two-thirds of all countries reported shortages of pediatric nephrologists (n = 116; 69%) with almost all countries in Africa (n = 40; 98%) and LICs (n = 19; 95%) reporting shortages. The calculation of the nephrologist workforce prevalence was limited by the use of absolute country population rather than the age specific populations cared for. The country population data source [6] for the ISN-GKHA was not stratified into age specific groups preventing reporting of pediatric nephrologist and adult nephrologist prevalence per the pediatric and adult populations respectively.

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Table 2. Pediatric nephrology workforce, shortages, and training program availability, by ISN region and World Bank income group.

https://doi.org/10.1371/journal.pgph.0004086.t002

A pediatric nephrology training program was available in 80/166 (48%) countries. Pediatric nephrology training programs were more available in HICs than LICs. Availability of training programs varied across ISN regions and country income groups (Table 2).

Access to kidney failure care and KRT for refugees

Globally, refugees did not have routine access to HD, PD, or KT in 34 (21%), 54 (33%), and 60 (37%) of the 162 countries that were represented in the survey (Fig 3 and S7–S10 Tables). ISN South Asia and OSEA regions had the highest proportions of countries where refugees did not routinely receive HD, PD, KT, or conservative kidney management (CKM). In countries of the ISN Western Europe and Eastern and Central Europe regions, refugees had the highest access to KRT as they were more likely to be covered through public funds free at point of delivery. Variations existed in funding structures for KRT and CKM across ISN regions and country income levels (Fig 3 and S7–S10 Tables).

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Fig 3. Funding for refugees to access KRT modalities, by World Bank income group*.

*Values represent absolute number of countries in each category expressed as a percentage of total number of countries.

https://doi.org/10.1371/journal.pgph.0004086.g003

Disaster preparedness

Survey respondents were asked about their country’s preparedness for natural disasters. Overall, 52 (32%) countries reported that dialysis facilities had guidelines for providing care in disasters (e.g., earthquake, flood, or drought). While more than half of countries in ISN North and East Asia (n = 5; 83%) and North America and the Caribbean (n = 9; 75%) regions had such guidelines, no countries in NIS and Russia and South Asia reported the availability of such measures (Table 3). Only 14 (9%) countries had a representative on the ISN-RDRTF. Representatives were mainly from the ISN Western Europe (4; 18%), Latin America (5; 24%), Eastern and Central Europe (2; 13%), Africa (2; 5%), and the Middle East (1; 9%) regions, with variations across country income levels (Table 3).

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Table 3. Availability of guidelines for disaster preparedness and representation on the ISN-RDRTF, by ISN region and World Bank income group (N, %).

https://doi.org/10.1371/journal.pgph.0004086.t003

Discussion

In this analysis, we have demonstrated significant inequities regarding access to kidney care for vulnerable people across all world regions and countries. This is more germane among children, the elderly, and refugees. These groups represent a sizeable proportion of the world population with children constituting almost 30% of the global population and those over 65 years numbering about 10% [7]. Further, there are 29.5 million refugees worldwide, 36% of which are children, and 75% living in LICs and LMICs [8]. The findings highlight the need to have systems in place to identify those who fall into vulnerable groups and learn from studies that explore the challenges in providing care to these individuals. The inequality in pediatric care is particularly notable in our results and is of concern given the recommendations of groups such as the WHO Consortium for the European Review of Social Determinants of Health and the Health Divide that focus on improving social and health care for young families and children as a means of reducing future health risk and vulnerability [9].

The provision of pediatric kidney care is strongly linked to the economic status and political commitment of nations to UHC. It has been well-established that in regions where resources are scarce, children were more disadvantaged than adults in access to healthcare [10]. The lack of insurance and publicly funded healthcare for children, resulting in the high out-of-pocket expenditure expressed in the qualitative responses of this survey, has been reported as an important barrier [11]. In addition to the economic and healthcare priorities of a country, poor awareness about pediatric kidney disease, and lack of robust data from national and international registries are important roadblocks in providing optimal care for pediatric kidney disease [12]. Furthermore, a paucity of pediatric-specific resources, including healthcare personnel, disposables, and equipment, is reported as a common barrier [10]. The shortage of pediatric nephrologists has been reported elsewhere, with the shortages worse in LICs [13]. However, the ISN-GKHA data demonstrate that this perceived shortage is global and substantial, not only in LICs but in HICs as well.

Surveys from the International Pediatric Nephrology Association (IPNA) identified similar barriers to kidney care for children. The lack of trained nephrologists and healthcare personnel, a lack of availability of facilities for KRT, and lack of financial support for healthcare were reported as important challenges in under-resourced regions of the world [14, 15]. Consistently reported barriers to care from the qualitative responses of the current ISN-GKHA emphasize the need for collective and collaborative action between international and regional organizations to address the key roadblocks. Universal healthcare for children, which is supported by public funding, should be a priority. There is a need for governments and international organizations to liaise with industry and to perhaps incentivize production to make pediatric-specific disposables available and accessible globally. While challenges in accessing care for children in low resource settings may relate more to the availability of services and inequities, challenges faced by children in HICs also need to be addressed. For example, one study of Australian Aboriginal and Torres Strait Islander children highlighted systemic and structural challenges that Indigenous children face in comparison to non-Indigenous children while accessing kidney care. These include an increased likelihood to commence HD (rather than PD or a pre-emptive KT), spend much longer on dialysis (22.3 vs. 10.6 months), and if transplanted, an increased likelihood of receiving a deceased donor kidney [16]. It is our opinion, that identifying and recognizing such inequities and biases provides a foundation for addressing these problems and can lead to improved access to and quality of nephrology care for children.

At the other end of the age spectrum, our data demonstrated significant gaps in CKD care and prevention. For instance, less than half of the LICs routinely screen the elderly for CKD, and these countries also have the added risk factors of low socioeconomic status and high comorbidity burden contributing to the CKD risk.

Moreover, the noted disparities in access to kidney care, particularly for KRT, among refugees calls for global attention and concerted action. These gaps in care are wide-spread and systemic as refugees are often described as having reduced access to employment, education, housing, nutrition, and social security programs compared to the general population [17–19]. Often, the unpredictable nature of events causing displacement results in both the refugee and the host countries being unable to access and provide basic services, respectively. The provision of these services is made more complicated among refugees requiring KRT [20–22].

Access to KRT among refugee populations around the world is challenged by multiple socio-economic, political, and specific health related factors. Many countries lacked enabling policies governing optimal refugee health. In particular, understanding the reasons why refugees experience lower access to KRT will facilitate formulation of policies and interventions toward improving access. First, the sudden discontinuation of care and lack of transmission of medical care notes, exacerbated by language barriers, impedes smooth care transition with likely adverse effects on the quality of KRT [23]. Second, the lack of a communicated policy to health workers on how to address refugee care issues is also a factor that hinders access to KRT for refugees. For instance, in one survey, it was reported that even in countries where the government reimbursed KRT, many facilities were unsure of what they were required to do when refugees needed care [24]. Third, given the financial challenges of displaced people, access to KRT may be denied in countries where the cost of KRT is not covered by the government [25, 26]. Unfortunately, as our data show, even in some countries where the government reimburses for the cost of KRT, refugees were excluded from the care the government reimburses. This is a critical global issue that needs addressing particularly with ever increasing cases of natural and man-made disasters displacing more individuals around the world.

It is well-established that disasters, such as earthquakes, floods, and prolonged drought, may be associated with disruptions in power, transportation, communication, water supply, and health services [27]. Patients with kidney disease are particularly vulnerable during disasters due to the need for timely access to advanced medical intervention, availability of specific medications, well-trained personnel, and functioning infrastructure [4]. Pre-disaster plans and preparedness are key to reducing the deaths and morbidity associated with disasters [27–30]. Guidelines at dialysis facilities provide information on steps to take to mitigate the adverse effects of disasters for staff, patients, and their caregivers [4]. Our data showed that disaster preparedness guidelines at dialysis facilities were most commonly available in HICs. Irrespective of country income group, a minority of all countries had dialysis unit disaster response guidelines, reflecting a lack of urgency in preparing for such events.

The ISN-RDRTF was initiated following the 1988 Armenian earthquake when it became apparent that, to prevent kidney failure related deaths, collaborative and coordinated efforts between aid organizations, international and local medical organizations, pharmaceutical companies, dialysis equipment manufacturers, volunteers, donors, and the local ministry of health were required [31–33]. The ISN-RDRTF works to ensure rapid access to dialysis for victims of disaster with acute kidney failure (AKI), and to prevent adverse outcomes among people receiving or needing KRT. Mortality rates amongst those with crush-related AKI undergoing dialysis have improved from about 41% in 1995 to about 15–20% between 1999–2005. This improvement has been achieved with the support of the ISN-RDRTF [30, 34–36]. However, recognized challenges in the ISN-RDRTF carrying out its role include the lack of local expertise and processes for navigating local systems. The ISN-GKHA data demonstrate very few countries with participants on the ISN-RDRTF; perhaps by promoting a model of broader participation on the ISN-RDRTF, guideline development for dialysis units and the ability to carry out disaster-related kidney failure interventions in disaster-impacted countries could be improved.

Conclusion

While this study has demonstrated significant gaps in access to kidney care for vulnerable people, especially among children, it has highlighted the need for urgent efforts to guarantee equitable access to optimal kidney care for vulnerable populations worldwide. Given ongoing global conflicts and various climate catastrophes that lead to massive displacement of people, there is an increased likelihood that populations that fall within vulnerable categories will continue to increase. This increases the need for developing and implementing policies that ensure adequate access to kidney care for this population. Support for governments, especially in low-resource settings, as well as coordinated international collaborations, will be required to address the inequities. To meet these goals, efforts should span across every level of healthcare from the healthcare provider, patient/family, institution to community with particular focus on patient-centered care, contextual care delivery, and shared decision making for better decisional outcomes [37].

Supporting information

Acknowledgments

The International Society of Nephrology provided administrative support for the design and implementation of the survey and data collection activities. The authors appreciate the support from the ISN’s Executive Committee, especially ISN Executive Director Charu Malik, regional leadership, and Affiliated Society leaders at the regional and country levels for their help with the ISN-GKHA. The authors also thank the Alberta Kidney Disease Network staff, in particular Ghenette Houston and Sophanny Tiv.