Functioning and health-related quality of life of adolescents with cerebral palsy: self versus parent perspectives

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 14y 6mo, age range 11-18y, 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 aged11 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.