Health-related quality of life in adults after pediatric kidney failure in Switzerland

BACKGROUND: Little is known about health-related quality of life (HRQoL) in adults after kidney failure during childhood. In this study, we analyzed HRQoL of adults after pediatric kidney failure in Switzerland and investigated socio-demographic and clinical factors associated with HRQoL. METHODS: In this cohort study, we sent questionnaires to 143 eligible patients registered in the Swiss Pediatric Renal Registry with continuous kidney replacement therapy starting before the age of 18 years. We assessed HRQoL using the Short-Form 36 version 1, compared HRQoL scores between our sample and the Swiss general population, and used linear regression models to examine socio-demographic and clinical factors associated with HRQoL. RESULTS: We included 79 patients (response rate 55%) with a mean age of 38.6 years (range 19.4–63.1). Compared to the general population, HRQoL scores were lower for physical functioning (− 12.43, p < 0.001), role physical (− 13.85, p = 0.001), general health (− 14.42, p < 0.001), vitality (− 4.98, p = 0.035), and physical HRQoL (− 6.11, p < 0.001), but we found no difference in mental HRQoL (− 0.13, p = 0.932). The socio-demographic factors—lower education, unemployment, and not being in a relationship—were associated with lower HRQoL. The only clinical factor associated with HRQoL was the type of kidney disease. Patients with acquired kidney diseases had lower mental HRQoL than patients with congenital anomalies of the kidney and urinary tract (− 11.4, p = 0.007) or monogenetic hereditary diseases (− 9.5, p = 0.018). CONCLUSIONS: Adults after pediatric kidney failure in Switzerland have lower physical, but similar mental HRQoL compared to the general population. Subgroups may require special attention with regard to their HRQoL. GRAPHICAL ABSTRACT: [Figure: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00467-022-05760-6.