[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.
Körner
I
I
Klinik für Urologie, Universitätsklinikum Essen, Germany. iris.koerner@barmherzigeregensburg.de
Schlüter
C
C
Lax
H
H
Rübben
H
H
Radmayr
C
C
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