[Health-related quality of life in children with spina bifida].
BACKGROUND
There are no studies on the health-related quality of life (HRQoL) in German children with a myelomeningocele (MMC). This study aims to obtain generalizable epidemiological data on the HRQoL of such children.


METHODS
KINDL-R questionnaires were filled out and clinical findings on typical MMC disabilities were also documented. Of the 115 families contacted, 70 MMC families responded (response rate 61%). Normative KINDL-R data from a sample of healthy children served as reference.


RESULTS
No differences in clinical data were found when comparing responders and non-responders. KINDL total scores as well as scores across all scales were highly concordant for parental reporting and self-reporting.


CONCLUSIONS
Despite the fact that children with MMC often suffer from severe physical limitations, their HRQoL is not necessarily lower than that of healthy children.
Klinik für Urologie, Universitätsklinikum Essen, Germany. iris.koerner@barmherzigeregensburg.de
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Körner
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Schlüter
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Lax
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Rübben
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Radmayr
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D005858:Germany / Q000453:epidemiology; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D011379:Prognosis; D011788:Quality of Life; D018570:Risk Assessment / Q000379:methods*; D012307:Risk Factors; D016135:Spinal Dysraphism / Q000175:diagnosis* / Q000453:epidemiology* / Q000523:psychology; D011795:Surveys and Questionnaires