Long-term social and professional outcomes in adults after pediatric kidney failure

BACKGROUND: Little is known about the long-term social and professional outcomes in adults after pediatric kidney replacement therapy (KRT). In this study, we described social and professional outcomes of adults after kidney failure during childhood and compared these outcomes with the general population. METHODS: We sent a questionnaire to 143 individuals registered in the Swiss Pediatric Renal Registry (SPRR) with KRT starting before the age of 18 years. In the questionnaire, we assessed social (partner relationship, living situation, having children) and professional (education, employment) outcomes. Logistic regression models adjusted for age at study and sex were used to compare outcomes with a representative sample of the Swiss general population and to identify socio-demographic and clinical characteristics associated with adverse outcomes. RESULTS: Our study included 80 patients (response rate 56%) with a mean age of 39 years (range 19–63). Compared to the general population, study participants were more likely to not have a partner (OR = 3.7, 95%CI 2.3–5.9), live alone (OR = 2.5, 95%CI 1.5–4.1), not have children (OR = 6.8, 95%CI 3.3–14.0), and be unemployed (OR = 3.9, 95%CI 1.8–8.6). No differences were found for educational achievement (p = 0.876). Participants on dialysis at time of study were more often unemployed compared to transplanted participants (OR = 5.0, 95%CI 1.2–21.4) and participants with > 1 kidney transplantation more often had a lower education (OR = 3.2, 95%CI 1.0–10.2). CONCLUSIONS: Adults after pediatric kidney failure are at risk to experience adverse social and professional outcomes. Increased awareness among healthcare professionals and additional psycho-social support could contribute to mitigate those risks. GRAPHICAL ABSTRACT: [Figure: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00467-023-06029-2.