Article

AIM : To determine whether there is a difference between perspectives of
functioning and health-related quality of life (HRQL) of parents and ambulatory
adolescents with spastic cerebral palsy (CP). METHOD: A total of 139 parent
patient pairs (73 females, 66 males; median age 14 y 6 mo, age range 11-18 y,
Gross Motor Function Classification System [GMFCS] levels I-III, with hemiplegia
[n=23], diplegia [n=103], triplegia [n=9], and quadriplegia [n=4]) were recruited
from outpatient CP clinics at three pediatric orthopaedic hospitals, between 2000
and 2006, from whom Pediatric Outcomes Data Collection Instrument (PODCI)
responses were collected. RESULTS: Cross-sectional data, calculated with
intraclass correlation coefficients [ICC], showed parents and adolescents agreed
more on functioning (ICC=0.488-0.748) than HRQL (ICC=0.242-0.568; PODCI). Parents
and adolescents both recognized significant comorbidities (ICC=0.502-0.713), but
adolescents saw themselves as less limited (ICC=0.330) than parents. The greatest
differences between parents and adolescents were in HRQL scales for male
adolescents, with only a small part explained by GMFCS level difference between
sexes (effect size 0.002-0.143). Age, parent well-being, and parent sex had
little effect and comorbidities had no effect. GMFCS level was the most common
predictor. INTERPRETATION: Most scales on health conditions, function, and HRQL
agreed between parents and adolescents aged 11 to 18 years. Parent proxy is
reasonable when necessary, but assessing both parents and adolescents gives
additional insight. Adolescents do not consider themselves as limited by health
conditions as parents do; parents have greater satisfaction with current level of
symptoms than adolescents, and findings vary on expectations for treatment.

Langue : ANGLAIS