Renal replacement therapy in patients with intellectual and developmental disabilities: a single-center case series of six patients

Abstract Background Advances in pediatric care have allowed people with intellectual and developmental disabilities (IDD) to live into adulthood, leading to a growing population requiring complex medical support, including renal replacement therapy (RRT) for end-stage kidney disease (ESKD). Although patients with IDD were historically excluded from RRT, recent reports have shown favorable outcomes when appropriate support is provided. This study reports our experience with six patients with IDD receiving RRT. Case presentation We describe two representative cases. The first was a 44-year-old man with renal hypoplasia and severe developmental disability (Yokochi D6) who had long-term pediatric nephrology follow-up at his residential facility. With progression to ESKD, conservative care was initially chosen due to concerns about RRT management. However, when creatinine rose to 8.75 mg/dL, multidisciplinary collaboration enabled arteriovenous shunt creation and initiation of hemodialysis (HD). Despite limited caregiver support, lack of transport, and inability to perform peritoneal dialysis (PD), outpatient HD was successfully maintained. The second case was a 34-year-old woman with renal hypoplasia (Yokochi A6) living with her family who required emergency HD for uremic symptoms. Involuntary movements during HD, transportation difficulties, and inadequate caregiver support hindered continuation. PD was initiated instead, serving as a bridge to planned living-donor kidney transplantation. Owing to cardiac dysfunction, transplantation was deferred, and PD was continued with adaptation of a bathtub-style exit site. Among the remaining four patients, two were managed with HD and two with PD. These cases illustrate the importance of individualized planning and multidisciplinary collaboration when initiating RRT in patients with IDD and complex psychosocial challenges. Conclusions Patients with IDD may undergo RRT successfully when care is individualized and supported by a multidisciplinary team. Treatment decisions should consider functional ability, living environment, and available resources in addition to medical criteria. Our findings highlight the importance of equitable access, person-centered planning, and community collaboration, though conclusions are limited by the small number of cases and heterogeneity of the population. Further work should focus on developing and evaluating tailored decision-making models and addressing systemic barriers to ensure dignity and improve quality of life for patients with IDD.