Quality of life in adults with XXXX since childhood is only partially impaired.

@entity1 @entity454
BACKGROUND: Little is known about the quality of life of adults with @entity454 ( @entity454 ) since childhood. In a long-term follow-up study, we assessed quality of life in these @entity1 and compared their outcomes with those in the general population and in dialysis @entity1 with adult-onset of @entity454 . METHODS: All Dutch adult @entity1 with onset of @entity454 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. @entity1 scores were compared with those of age-matched healthy controls and with those of @entity1 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 @entity1 . Clinical characteristics of @entity1 and non- @entity1 were similar. Compared with the general population, we found a higher prevalence of impaired quality of life in dialysis @entity1 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 @entity1 , only impaired GH and SF were more prevalent. In dialysis @entity1 with adult @entity454 onset, impaired quality of life was more prevalent than in the general population in all domains, except in emotional role limitations. CONCLUSIONS: Dialysis @entity1 with paediatric @entity454 have an impaired physical quality of life, but in contrast to dialysis @entity1 with adult @entity454 onset, they have a normal mental quality of life.
