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Selected illustrative quotations from the open text pediatric sections of the International Society of Nephrology Global Kidney Health Atlas survey
Contexts in source publication
Context 1
... disparities were reported for children's access to KRT (overall 23%, LIC 58%, LMIC 33%, UMIC 13%, HIC 9%) ( Table 1). A selection of illustrative quotes from the open text survey responses is provided in Table 2. ...Context 2
... differences in funding were noted based on dialysis modality, age, and whether private insurance, nongovernment organizations, or charities also contributed to the overall cost of kidney-related treatments (Table 1). Where government funding was unable to cover the majority of kidney care (or not available at all), as was most common in LIC, respondents reported that private funding by families was a principal barrier to accessing treatment ( Table 2). "Most children are left to die because of the high cost of KRT services (since payment for services is mostly out-of-pocket). . ...Context 3
... countries with limited pediatric nephrology expertise, some children with ESKD were treated by nonpediatric specialists: ". . . adult nephrologists look after children and sometimes care is neither efficient, expert or expeditious" (Trinidad and Tobago) ( Table 2). ...Context 4
... (Ethiopia). This was particularly common in LICs and was attributed to a combination of prohibitive costs or a general lack of availability of local suppliers (Table 2). ". . . ...Context 5
... travel distances for children to access KRT. Across all regions and income levels, respondents described a centralization of pediatric-specific services (if available at all) to a limited number of specialist centers within a country, necessitating the need for patients (and their families) to travel or relocate (Table 2). "Pediatric KRT services [are] in the large cities so pediatric patients who live far away have to travel or move to undergo treatment . . ...Citations
... even more disparate. 5,6 The challenge in providing care has been described on national or regional levels for nondialysis chronic kidney disease, 7 dialysis, 8 and transplant care, 9,10 with reports of high rates of discontinuation of care in children with kidney failure. 11 However, there remains a paucity of robust and comprehensive data focusing on the spectrum of pediatric kidney care (nondialysis chronic kidney disease, dialysis, and transplantation), and the barriers faced in LMICs globally. ...
... In many countries, adult nephrologists, who lack training in pediatricspecific disease management and pediatrics in general, are tasked with providing pediatric nephrology care. 5 A recent analysis of pediatric nephrology training in Africa emphasized the importance of training in regional centers and hands-on training in improving the provision of care in resource-limited regions. 14 The focus placed on developing this training by IPNA and the International Society of Nephrology has resulted in more pediatric nephrology-trained physicians in LMICs and our ability to survey so many LMICs captures this success. ...
... Lack of government funding for dialysis, especially PD, lack of medical and technical expertise, poor availability of pediatric-specific supplies, and poor access to transplantation were reported as important barriers in our study and others. 2,5,25 Although transplantation is the best form of KRT, children with kidney failure have limited access to transplantation. 3,5 Only a third of centers reported in the survey were able to provide kidney transplantation. ...
... For children, the situation is even more dire. In the 2018 Global Health Kidney Atlas, nearly 40% of LICs and LMICs reported absent or extremely limited access to a paediatric nephrologist 130 . At the individual level, the costs of kidney care can be staggering. ...
... Studies report disparities in access to kidney care in children and adults in 29% of countries globally, with these disparities more frequent in low-income countries: LIC 62%, LMIC 38%, UMIC 18%, and HIC 19% [14]. Although 99% of countries report having access to hemodialysis for both children and adults [14], only 79% of centers in low-income areas report access to chronic hemodialysis for children and 14% of these do not receive public financial support [15]. ...
... Studies report disparities in access to kidney care in children and adults in 29% of countries globally, with these disparities more frequent in low-income countries: LIC 62%, LMIC 38%, UMIC 18%, and HIC 19% [14]. Although 99% of countries report having access to hemodialysis for both children and adults [14], only 79% of centers in low-income areas report access to chronic hemodialysis for children and 14% of these do not receive public financial support [15]. In these centers in low-income areas, 58% reported having access to continuous outpatient peritoneal dialysis and 39% to peritoneal dialysis with cycler [15]. ...
... These disparities may partly be related to the allocation of economic resources for health care in different countries. In low-income countries, the highest proportion of children had to pay for their health care from their own resources, while in high-income countries, children were favored over adults in terms of allocation of state economic resources for their attention [14]. ...
... 106 In many settings, particularly low-income countries, children do not have access to KRT because it is unavailable, geographically inaccessible, or too costly. 105,[107][108][109] It has been estimated that globally, <10% of children with kidney failure receive the KRT they need. 106 In a systematic review of studies in sub-Saharan Africa, only 35% of children remained on dialysis for at least 3 months, with inability to pay being the key driver, and an estimated 95% of children who needed but did not receive dialysis died. ...
Children and adolescents in families of lower socioeconomic position (SEP) experience an inequitable burden of reduced access to healthcare and poorer health. For children living with chronic kidney disease (CKD), disadvantaged SEP may exacerbate their considerable disease burden. Across the life-course, CKD may also compromise the SEP of families and young people, leading to accumulating health and socioeconomic disadvantage. This narrative review summarizes the current evidence on relationships of SEP with kidney care and health among children and adolescents with CKD from a life-course approach, including impacts of family SEP on kidney care and health, and bidirectional impacts of CKD on SEP. It highlights relevant conceptual models from social epidemiology, current evidence, clinical and policy implications, and provides directions for future research. Reflecting the balance of available evidence, we focus primarily on high-income countries (HICs), with an overview of key issues in low- and middle-income countries (LMICs). Overall, a growing body of evidence indicates sobering socioeconomic inequities in health and kidney care among children and adolescents with CKD, and adverse socioeconomic impacts of CKD. Dedicated efforts to tackle inequities are critical to ensuring that all young people with CKD have the opportunity to live long and flourishing lives. To prevent accumulating disadvantage, the global nephrology community must advocate for local government action on upstream social determinants of health; and adopt a life-course approach to kidney care that proactively identifies and addresses unmet social needs, targets intervening factors between SEP and health, and minimizes adverse socioeconomic outcomes across financial, educational and vocational domains.
... Patients from socioeconomically disadvantaged backgrounds are more likely to experience poorer overall health in comparison to their peers from more advantaged backgrounds [14,15]. Children from remote and rural areas requiring kidney replacement therapy face disparities that can be attributed to barriers to healthcare access, paucity of child-specific resources, and lifelong costs of care [16]. Prior work has shown that children with CKD whose caregivers are unemployed, have lower incomes, poorer selfperceived financial status and lack of home ownership are at least twice as likely to experience poor to fair overall health compared to children with more affluent caregivers [14,15]. ...
Background
Children with chronic kidney disease (CKD) require multidisciplinary care to meet their complex healthcare needs. Patient navigators are trained non-medical personnel who assist patients and caregivers to overcome barriers to accessing health services through care coordination. This trial aims to determine the effectiveness of a patient navigator program in children with CKD.Methods
The NAVKIDS2 trial is a multi-center, waitlisted, randomized controlled trial of patient navigators in children with CKD conducted at five sites across Australia. Children (0–16 years) with CKD from low socioeconomic status rural or remote areas were randomized to an intervention group or a waitlisted control group (to receive intervention after 6 months). The study primary and secondary endpoints include the self-rated health (SRH) (primary), and utility-based quality of life, progression of kidney dysfunction of the child, SRH, and satisfaction with healthcare of the caregiver at 6 months post-randomization.ResultsThe trial completed recruitment in October 2021 with expected completion of follow-up by October 2022. There were 162 patients enrolled with 80 and 82 patients randomized to the immediate intervention and waitlisted groups, respectively. Fifty-eight (36%) participants were from regional/remote areas, with a median (IQR) age of 9.5 (5.0, 13.0) years, 46% were of European Australian ethnicity, and 65% were male. A total of 109 children (67%) had CKD stages 1–5, 42 (26%) were transplant recipients, and 11 (7%) were receiving dialysis.Conclusion
The NAVKIDS2 trial is designed to evaluate the effectiveness of patient navigation in children with CKD from families experiencing socioeconomic disadvantage.Graphical abstract
A higher resolution version of the Graphical abstract is available as Supplementary information
... Sixteen million households in the United States were food insecure in 2020, with 22% of American children living in food insecure households [1]. FI is an important social determinant of health and is more common in children with chronic diseases [2,3]. Pediatric FI impacts a higher proportion of children with kidney disease, occurring in 35% of children seen in a general nephrology clinic and 65% of children with end-stage kidney disease (ESKD) [4,5]. ...
Background
Food insecurity, an important social determinant of health among children, has become more common during the COVID-19 pandemic. Children with chronic diseases including end-stage kidney disease (ESKD) are at higher risk of food insecurity due to their complex care needs, medication burden, and dietary restrictions. No data exists describing food insecurity prevalence in pediatric ESKD patients during the COVID-19 pandemic.
Methods
Food insecurity was assessed among families of children (age 0–18 years) with ESKD on chronic dialysis at two pediatric academic medical centers. Families were screened in April 2020 using the Hunger Vital Sign, a validated 2-question screening tool. We assessed impact of COVID-19 on food insecurity. We compared serum phosphorus “pre-COVID” (January/February 2020) to “during COVID” (April/May 2020).
Results
A total of 29 families enrolled in this study. 62% (18/29) of children with ESKD lived in food insecure households, and of those, 72% (13/18) reported that COVID-19 had worsened their food insecurity status. During the COVID-19 pandemic, food insecure patients experienced greater rise in their serum phosphorus levels (1.1 mg/dL vs. 0 mg/dL, p = 0.03) and decreased likelihood of having adequate phosphorus control (50% vs. 11%, p = 0.03).
Conclusion
Food insecurity was common among children with ESKD on chronic dialysis during the COVID-19 pandemic. Children with food insecurity had a greater increase in their phosphorus levels during the pandemic than did food secure children. Further exploration into how food resources such as an onsite food pantry impacts food insecurity and phosphorus control in children with ESKD is essential.
... Disparity in access to healthcare, particularly KRT, has been observed among women and children in low-and low-middle-income countries in Asia [8]. The gaps in meet- ...
Chronic kidney disease (CKD) is a unique public health problem in terms of high expenses required for its management and its increasing worldwide incidence. Understanding the existing structure of CKD treatment and its epidemiology is pivotal for equitable kidney care globally. The Global Kidney Health Atlas (GKHA) was launched by the International Society of Nephrology (ISN) in 2017 as a part of its “Bridging the Gaps” strategy with a vision to understand the global kidney care capacity. Two rounds of GKHA surveys were conducted and published in 2017 and 2019, respectively. The GKHA surveys showed significant variability in kidney care among global regions. Asia is the largest of all continents and distinct for its heterogeneity. The Asia-Pacific sector comprises four main regional constructs of the ISN; North and East Asia, Oceania and South East Asia, South Asia, and the Middle East. Kidney care capacity varies among these regions in terms of government spending, epidemiology of kidney diseases, and workforce availability. In this narrative review, we highlight the differences in kidney care delivery among the regions of the Asia-Pacific sector based on information from GKHA and emphasize the priority areas on which stakeholders should concentrate their efforts.
... Countries, such as India, China, and Nigeria, continue to report a strong sex imbalance, where boys are transplanted more often than girls and women make up the predominant number of living donors. 7,9,10 Even in higher income countries, such as the United States and the United Kingdom, sex disparities remain, with girls at increased risk of death, graft loss, and eGFR decline. 11,12 There are few studies to date examining whether sex disparities in graft outcomes exist for children living in higher income countries and with universal healthcare, and none in Australia and New ...
Background
Data on sex-based disparities in children with kidney failure and outcomes after kidney transplantation are relatively sparse. This study examined the association between sex differences and the odds of receiving a pre-emptive living donor kidney transplantation, and post-transplant outcomes in children and adolescents.
Methods
We studied all patients (aged <20 years) who commenced kidney replacement therapy (KRT) between 2002 and 2017 using data from the ANZDATA Registry. Factors associated with graft loss and acute rejection after transplantation were assessed using multivariable Cox regression model. Differences in the odds of receiving a pre-emptive live donor transplant between sexes were assessed using adjusted logistic regression.
Results
Of the 757 children transplanted during the study period, 497 (65.7%) received a live donor kidney (163, 21.5% pre-emptive). In total, 168 (22.2%) patients experienced graft loss and 213 (28.1%) patients experienced a first episode of acute rejection during the median follow-up period of 6.9 years (IQR 3.5–11.5 years). There were no differences in the rates of graft loss or acute rejection by sex. Compared with boys, the adjusted hazard ratios (aHR) (95% confidence interval) for graft loss and acute rejection in girls were 0.97 (0.71–1.33) and 1.09 (0.82–1.44), respectively. Among children who received living donor kidney transplants, there were no sex differences in the odds of receiving a pre-emptive transplant (adjusted odds ratio (aOR) 0.90 (95% CI 0.56–1.45)).
Conclusions
No sex differences were observed in the odds of receiving a pre-emptive living donor kidney transplant or outcomes after kidney transplantation.
... Fourteen million households in the United States were food insecure in 2019, with 20% of American children living in food insecure households [1]. FI is an important social determinant of health and is more common in children with chronic diseases [2,3]. Pediatric FI impacts a higher proportion of children with kidney disease, occurring in 35% of children seen in a general nephrology clinic and 65% of children with end-stage kidney disease (ESKD) [4,5]. ...
Background
Food insecurity, an important social determinant of health among children, has become more common during the COVID-19 pandemic. Children with chronic diseases including end-stage kidney disease (ESKD) are at higher risk of food insecurity due to their complex care needs, medication burden, and dietary restrictions. No data exists describing food insecurity prevalence in pediatric ESKD patients during the COVID-19 pandemic.
Methods
Food insecurity was assessed among families of children (age 0-18 years) with ESKD on chronic dialysis at two pediatric academic medical centers. Families were screened in April 2020 using the Hunger Vital Sign, a validated 2-question screening tool. We assessed impact of COVID-19 on food insecurity. We compared serum phosphorus “pre-COVID” (January/February 2020) to “during COVID” (April/May 2020).
Results
A total of 29 families enrolled in this study. 62% (18/29) of children with ESKD lived in food insecure households, and of those, 72% (13/18) reported that COVID-19 had worsened their food insecurity status. During the COVID-19 pandemic, food insecure patients experienced greater rise in their serum phosphorus levels (p=0.03) and decreased likelihood of having adequate phosphorus control (p=0.03).
Conclusion
Food insecurity was common among children with ESKD on chronic dialysis during the COVID-19 pandemic. Children with food insecurity had a greater increase in their phosphorus levels during the pandemic than did food secure children. Further exploration into how food resources such as an onsite food pantry impacts food insecurity and phosphorus control in children with ESKD is essential.
Background
Kidney transplantation remains the treatment of choice for children with kidney failure (KF). In South Africa, kidney replacement therapy (KRT) is restricted to children eligible for transplantation. This study reports on the implementation of the Paediatric Feasibility Assessment for Transplantation (pFAT) tool, a psychosocial risk score developed in South Africa to support transparent transplant eligibility assessment in a low‐resource setting.
Methods
Single‐center retrospective descriptive analysis of children assessed for KRT using pFAT tool from 2015 to 2021.
Results
Using the pFAT form, 88 children (median [range] age 12.0 [1.1 to 19.0] years) were assessed for KRT. Thirty (34.1%) children were not listed for KRT, scoring poorly in all domains, and were referred for supportive palliative care. Fourteen of these 30 children (46.7%) died, with a median survival of 6 months without dialysis. Nine children were reassessed and two were subsequently listed. Residing >300 km from the hospital ( p = .009) and having adherence concerns ( p = .003) were independently associated with nonlisting. Of the 58 (65.9%) children listed for KRT, 40 (69.0%) were transplanted. One‐year patient and graft survival were 97.2% and 88.6%, respectively. Only one of the four grafts lost at 1‐year posttransplant was attributed to psychosocial issues.
Conclusions
Short‐term outcomes among children listed using the pFAT form are good. Among those nonlisted, the pFAT highlights specific psychosocial/socioeconomic barriers, over which most children themselves have no power to change, which should be systemically addressed to permit eligibility of more children and save lives.
