Quality of life of adolescents with cerebral palsy: agreement between self-report and caregiver's report.
Mariana Ceravolo Ferreira, Nathália Ribeiro Garcia, Cejane Oliveira Martins Prudente and 1 others
PMID 32609264WHAT IT FOUND
Caregivers of adolescents with cerebral palsy rated the adolescents' quality of life lower than the adolescents did, including physical health and daily activities.
Agreement was poor, so ask the adolescent directly when they can self-report.
Key findings
01Caregivers reported lower quality of life than adolescents in all domains where the reports differed.
02Agreement between adolescent self-report and caregiver report was poor for psychosocial health and for PedsQL 3.0 domains except movement and equilibrium.
03Physical health was the most affected PedsQL 4.0 score in both reports; adolescents' worst PedsQL 3.0 domains were school activities and fatigue, while caregivers' worst was daily activities.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The design is cross-sectional, so it cannot show what causes poor quality of life or whether asking adolescents directly changes care. Only adolescents who could understand a screening question and were linked to educational or rehabilitation institutions were included, so results may not apply to adolescents with more severe communication impairment or those not attending services. The study was done in one Brazilian city, and most caregivers were mothers, so the agreement pattern may not generalise to other settings or caregiver types. The paper compares questionnaire reports; it does not test a treatment or show which report is more accurate for every adolescent.
The easy way to misread this
Do not conclude that caregiver reports are wrong or should be discarded. The study shows poor agreement and lower caregiver scores in some domains, but it did not test whether using adolescent self-report improves care, and adolescents who could not self-report were excluded.