title: The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood.
abstract: Little is known about the impact of the course of life of children with end-stage renal disease (ESRD) on their quality of life in adulthood. We therefore assessed the course of life of adult patients with onset of ESRD at an age of <15 years between 1972 and 1992 and compared it with that of the general population. Furthermore, we explored how course of life is associated with quality of life (QoL) in young adulthood. A total of 75 young adult patients who had had ESRD since childhood, aged between 20 years and 30 years, completed the RAND-36 Health Survey and a questionnaire, which retrospectively assesses the achievement of development milestones. Patients achieved fewer milestones than peers with respect to autonomy, social, and psycho-sexual development, and displayed less risk behaviour. Patients who achieved fewer social milestones while growing up experienced more emotional problems and less vitality, and they had a lesser overall mental quality of life. Paediatric nephrologists should pay more attention to the development of social and independent functioning of children with ESRD in order to prepare them for active participation in society in adult life.
authors.affiliation: Paediatric Psychosocial Department, Emma Children's Hospital AMC, University of Amsterdam, P.O. Box 22700, 1100 DE Amsterdam, The Netherlands. m.a.grootenhuis@amc.uva.nl
authors.forename: Martha Alexandra
authors.initials: MA
authors.lastname: Grootenhuis
authors.forename: Heleen
authors.initials: H
authors.lastname: Stam
authors.forename: Bob F
authors.initials: BF
authors.lastname: Last
authors.forename: Jaap W
authors.initials: JW
authors.lastname: Groothoff
mesh_terms: D000328:Adult; D002648:Child; D003430:Cross-Sectional Studies; D002658:Developmental Disabilities / Q000209:etiology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007676:Kidney Failure, Chronic / Q000150:complications*; D008297:Male; D011788:Quality of Life