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.
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.
Authors: James W Varni; Tasha M Burwinkle; Sandra A Sherman; Kanela Hanna; Susan J Berrin; Vanessa L Malcarne; Henry G Chambers Journal: Dev Med Child Neurol Date: 2005-09 Impact factor: 5.449
Authors: James W Varni; Tasha M Burwinkle; Susan J Berrin; Sandra A Sherman; Kanela Artavia; Vanessa L Malcarne; Henry G Chambers Journal: Dev Med Child Neurol Date: 2006-06 Impact factor: 5.449
Authors: Annette Majnemer; Michael Shevell; Mary Law; Rena Birnbaum; Gevorg Chilingaryan; Peter Rosenbaum; Chantal Poulin Journal: Dev Med Child Neurol Date: 2008-10 Impact factor: 5.449
Authors: Ana Paula Hermont; Ana Carolina Scarpelli; Saul M Paiva; Sheyla M Auad; Isabela A Pordeus Journal: Qual Life Res Date: 2014-12-02 Impact factor: 4.147
Authors: Astrid Janssens; Morwenna Rogers; Rebecca Gumm; Crispin Jenkinson; Alan Tennant; Stuart Logan; Christopher Morris Journal: Dev Med Child Neurol Date: 2015-12-11 Impact factor: 5.449