Low renal transplantation rates in children with end‐stage kidney disease: A study of barriers in a low‐resource setting

Abstract

After 2 decades as a low‐cost transplant centre in India, our rates of kidney transplantation are low compared to the burden of end‐stage kidney disease (ESKD). We performed this study to identify possible barriers inhibiting paediatric kidney transplant and to assess the outcomes of paediatric ESKD. A retrospective chart review of ESKD patients (2013 ‐ 2018) at a tertiary paediatric nephrology centre was conducted. Medical/non‐medical barriers to transplant were noted. Patient outcomes were classified as “continued treatment,” “lost to follow‐up (LTFU)” or “died.” Of 155 ESKD patients (monthly income 218 USD [146, 365], 94% self‐pay), only 30 (19%) were transplanted (28 living donor). Sixty‐five (42%) were LTFU, 19 (12%) died, and 71 (46%) continued treatment. LTFU/death was associated with greater travel distance (300 km [60, 400] vs 110 km [20, 250] km, P < .0001) and lower monthly income (145 USD [101, 290] vs 290 USD [159, 681], P < .0001). Among those who continued treatment, 41 proceeded to transplant evaluation of whom 13 had no living donor and remained waitlisted for 27 months (15, 30). The remainder (n = 30) did not proceed to transplant due to unresolved medical issues (n = 10) or a lack of parental interest in pursuing transplant (n = 20). Barriers to transplantation in low‐resource setting begin in ESKD. LTFU resulted in withdrawal of care and was associated with low socioeconomic status. Among those who continued treatment, transplant rates were higher but medical challenges and negative attitudes towards transplant and organ donation occurred.

A systematic review of social determinants of health in pediatric organ transplant outcomes

“…Five studies found no association between SES and pre‐transplant outcomes, including no associations with waitlist mortality, 27,28 likelihood of 28 or time to transplant, 49 or transplant knowledge 48 . Among families in India, those who did not consent to transplant had the same income and education as those who consented; however, fewer families with daily‐wage‐earning jobs consented and completed transplant 53 …”

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

“…Due to the lack of awareness of CKD symptoms, opportunities for preventative and disease modifying care are lost ( 28 ). Referral to a pediatric nephrology center occurs late, when the child is already in kidney failure and the decision to initiate dialysis is taken in a crisis situation ( 29 – 31 ).…”

“…Further, utilization of dialysis is impacted by need for travel to access care ( 23 , 42 ). Treatment non-adherence is common and dialysis is commonly discontinued resulting in high rates of patient death or loss to follow up ( 29 , 43 – 45 ). The net effect is significant patient suffering, family suffering, and clinician suffering with little benefit and incredible expense—not because dialysis treatment does not or cannot work, but because the resources needed for it are not available.…”

“…Due to routine under-dialysis, children have higher rates of infectious complications, more morbidity and poorer quality of life (QoL) compared to their HIC counterparts ( 65 , 66 ). Death or discontinuation of treatment occurs in 50–80% of children ( 29 , 67 ). The stigma surrounding foregoing dialysis can prevent opportunities for children to receive compassionate conservative care or symptom focused palliative treatment, adding further suffering.…”

“…Women compose the majority of kidney donors worldwide ( 29 , 74 , 98 ). Living kidney donation is associated with surgical risk and the possibility of CKD in the long-term.…”