De gezondheidsbeleving van jongvolwassen patiënten met een terminale nierinsufficiëntie sinds de kinderleeftijd is slechts gedeeltelijk gestoord

In a long-term follow-up study we assessed the quality of life (Qol) in adults with end-stage renal disease (ESRD) since childhood and compared their outcomes with those in the general population and in dialysis patients with adult onset of ESRD. All Dutch adult patients with onset of ESRD at age 0-14 years between 1972 and 1992 and born before 1979 were asked to complete the RAND-36 questionnaire. We obtained clinical information reviewing all available medical charts. Patient scores were compared to those of age-matched healthy controls and to those of patients with adult onset of dialysis, of whom data were derived from a national study on the adequacy of dialysis (NECOSAD-2). We obtained a RAND-36 score in 135 out of 187 surviving patients. Clinical characteristics of participants and non-participants were similar. In transplanted patients, only impaired General Health Perception (GH) and Social Functioning (SF) were more prevalent than in the general population. In dialysis patients we found a higher prevalence of impaired Qol in the following domains: Physical Functioning, Role Limitations due to Physical Health, SF, GH, and Physical Component Summary. In other domains, impaired Qol was equally or less (Mental Component Summary) prevalent. In dialysis patients with adult ESRD onset, impaired Qol was more prevalent than in the general population in all domains, except in Emotional Role limitations. Adult transplanted patients with paediatric ESRD have an almost normal Qol. Adult dialysis patients with paediatric ESRD have an impaired physical Qol, but a normal mental Qol, contrary to dialysis patients with adult ESRD onset.