Perspectives on Peritoneal Dialysis and Kidney Transplant in Adolescents and Young Adults: A Qualitative Study

Rationale & Objective Peritoneal dialysis and kidney transplantation confer better quality of life than hemodialysis, but uptake is low in adolescents and young adults. Our objective was to explore perspectives on peritoneal dialysis and living donor kidney transplantation among adolescents and young adults with chronic kidney disease. Study Design Qualitative study using semi-structured interviews. Setting & Participants: Thirteen adolescents and young adults with non-dialysis-dependent chronic kidney disease and ten of their parents were recruited from a single academic medical center in the San Francisco Bay Area, California, USA. Analytical Approach Interview transcripts were analyzed qualitatively to identify prevalent themes. Results Perspectives on peritoneal dialysis included: (1) lack of awareness of peritoneal dialysis as a treatment option; (2) negative impressions of dialysis based on anecdotes from people receiving hemodialysis; and (3) infectious concerns regarding home dialysis. Perspectives on living donor kidney transplantation included: (1) resistance to an illness-centered identity, (2) misperception and confusion regarding the waitlisting process, (3) "heavy guilt": the burden of responsibility for adverse outcomes after directed donation, and (4) ensuring living donor availability for the future. An overlapping theme of reliance on mothers for CKD caregiving and potential donation was also identified. Limitations This single-center study included patients referred to one kidney transplant center and findings may be context-specific. Conclusions Adolescents and young adults with chronic kidney disease and their parents had low awareness of peritoneal dialysis and low levels of engagement in the search for donors. Some barriers were unique to this population and differed from those previously identified among older adults with kidney failure. Providers should be aware of these differences when counseling this younger population on kidney replacement therapy options. Plain Language Summary Peritoneal dialysis and kidney transplants may offer a better day-to-day life for young people with chronic kidney disease, compared to in-center hemodialysis. However, many adolescents and young adults do not receive peritoneal dialysis or a living donor kidney transplant. To understand why, we interviewed adolescents and young adults with chronic kidney disease and their parents. We found that many of them had never heard of peritoneal dialysis, were confused about the kidney donation process, or felt guilty accepting a kidney from someone they knew. These findings are important because younger patients have different concerns than older adults with kidney disease regarding various kidney failure treatments, and education on treatment modalities should address the specific concerns of younger patients.