Nephrol Dial Transplant (2003) 18: 310-317
© 2003 European Renal Association-European Dialysis and Transplant Association
Quality of life in adults with end-stage renal disease since childhood is only partially impaired
1 Department of Paediatric Nephrology, 2 Paediatric Psychosocial Department, 3 Department of Paediatrics and 4 Department of Clinical Epidemiology and Biostatistics, Emma Children's Hospital AMC, Amsterdam, The Netherlands
Background. Little is known about the quality of life of adults with end-stage renal disease (ESRD) since childhood. In a long-term follow-up study, we assessed quality of life in these patients and compared their outcomes with those in the general population and in dialysis patients with adult-onset of ESRD.
Methods. All Dutch adult patients with onset of ESRD at age 0–14 years between 1972 and 1992 were asked to complete the RAND-36 questionnaire. We obtained clinical information by reviewing all available medical charts, and by current history. Patient scores were compared with those of age-matched healthy controls and with those of patients with adult onset of dialysis, of whom data were derived from a national study on the adequacy of dialysis (NECOSAD-2).
Results. We obtained a complete RAND-36 score in 131 of 187 surviving patients. Clinical characteristics of participants and non-participants were similar. Compared with the general population, we found a higher prevalence of impaired quality of life in dialysis patients in the following domains: physical functioning, role limitations due to physical health, social functioning (SF), general health perception (GH) and physical component summary. In other domains, impaired quality of life was equally or less prevalent (mental component summary). In transplanted patients, only impaired GH and SF were more prevalent. In dialysis patients with adult ESRD onset, impaired quality of life was more prevalent than in the general population in all domains, except in emotional role limitations.
Conclusions. Dialysis patients with paediatric ESRD have an impaired physical quality of life, but in contrast to dialysis patients with adult ESRD onset, they have a normal mental quality of life.
Keywords: adult-onset ESRD; childhood-onset ESRD; epidemiology; NECOSAD-2; quality of life; RAND-36
Correspondence and offprint requests to: J. W. Groothoff, MD, Department of Paediatric Nephrology, Emma Children's Hospital AMC, University of Amsterdam, PO Box 22700, 1100 DE Amsterdam, The Netherlands. Email: j.w.groothoff{at}amc.uva.nl