Long-term quality of life and social outcome of childhood end-stage renal disease.
OBJECTIVE
To assess quality of life (QoL) and social status after 30 years of renal-replacement therapy (RRT) and to explore determinants of this QoL.


METHODS
The cohort comprised all Dutch patients, born before 1979, who started RRT at age<15 years in 1972-1992. All patients still alive in 2010 were asked to complete questionnaires on QoL (RAND-36) and sociodemographic outcomes. Scores were compared with those in the age-matched general population and with previous patient scores obtained in 2000. We performed logistic regression analysis for prediction of QoL outcomes.


RESULTS
A total of 89 of 152 patients still alive in 2010 participated. Compared with the general population, QoL more often was impaired in patients receiving dialysis for most physical domains, in transplanted patients only on general health perception. Both transplanted and dialysis patients had normal or high scores on mental health. Scores in most physical domains were lower than in 2000. Patients were employed less often (61.8% vs 81.0%), had fewer offspring (31.5 vs 64.8%), and were less likely to have an income equal to or above average (34.8% vs 55.7%) compared with the general population. Disabilities, comorbidity, and unemployment were associated with impaired QoL.


CONCLUSIONS
After 30 years of RRT, adult survivors of pediatric end-stage renal disease have an impaired physical but a good mental QoL. The decrease of general health perception and physical functioning over time is worrying and may further hamper employment status and social functioning of these relatively young patients.
Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands. Electronic address: l.a.tjaden@amc.uva.nl.
Lidwien A
LA
Tjaden
Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands.
Judith
J
Vogelzang
Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands.
Kitty J
KJ
Jager
Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands.
Karlijn J
KJ
van Stralen
Psychosocial Department, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands.
Heleen
H
Maurice-Stam
Psychosocial Department, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands.
Martha A
MA
Grootenhuis
Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands.
Jaap W
JW
Groothoff
D000293:Adolescent; D000328:Adult; D002648:Child; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology* / Q000628:therapy; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D011788:Quality of Life / Q000523:psychology*; D017582:Renal Replacement Therapy / Q000379:methods; D011795:Surveys and Questionnaires