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Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

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Majnemer, A.; Shevell, M.; Law, M.; Poulin, C.; Rosenbaum, P.

BACKGROUND: Quality of life is recognized as an important outcome of health services. Ideally, the child’s perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities. PURPOSE: In a sample of school-aged children with cerebral palsy (CP), we compared a parent’s perspective of their child’s quality of life with their child’s own perspective, when feasible. METHODS: Forty-eight children completed the Pediatric Quality of Life Inventory (PedsQL) measure independently (n = 33/48, 69% Gross Motor Function Classification System (GMFCS) I; n = 6/48, 12% III-V). A parent completed the proxy version and the scores were compared. RESULTS: Intraclass correlation (ICC) coefficients were high for physical (ICC = 0.72, confidence interval [CI]: 0.55-0.83) and moderate for psychosocial (ICC = 0.54, CI: 0.30-0.71) well-being, with the weakest agreement on school functioning and the strongest agreement for ratings of physical health. Parental ratings were more often lower, especially for social functioning, although children rated themselves lower on emotional functioning. Factors associated with a closer agreement between parent-child pairs included older age, male gender, higher social competency, functional abilities, and fewer emotional symptoms (r (2) = 0.07-0.30). CONCLUSION: In children with CP, parents’ ratings of their children’s quality of life are generally comparable as a group to their child’s self-report. Disparities do exist, particularly in psychosocial domains, and, therefore, the child’s own perspective should be considered whenever feasible.

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