COMPARISON OF PARENT AND YOUTH REPORTS OF HEALTH-RELATED QUALITY OF LIFE IN CEREBRAL PALSY

Abstract

Purpose/Hypothesis: Cerebral palsy (CP) is associated with reduced health related quality of life (HRQL) secondary to neuromuscular impairments, activity restrictions, and participation limitations. HRQL measures are used to plan interventions and to evaluate treatment outcomes. Usually, HRQL information for youths with CP is obtained from parents. However, discrepancies between youth self-reports and parent proxy reports are well documented. The purpose of this study was to further examine the agreement between parent proxy and self-reports of HRQL in youths with CP. We hypothesized that agreement between parents and youths would be greatest for scales measuring observable (behavioral) areas of functioning and lowest for scales assessing subjective states. When discrepancies were found, and based on the findings from previous research, we hypothesized that parents would rate HRQL lower than youths. Number of Subjects: A convenience sample of 28 dyads of youths with CP and their parents were recruited through a tertiary care children's hospital and public postings. Participants were primarily male (n = 19) with a mean age of 14.1 years (range 8-20). Gross Motor Function Classification System levels were I = 8, II = 6, III = 6, IV = 4, and V = 4 and the topography of CP was spastic quadriplegia, (9) hemiplegia, (3) and diplegia, (16). Materials/Methods: The Child Health Questionnaire Parent Form (CHQ-PF-28) and Child Form (CHQ-CF-87) were administered as part of an ongoing study of pain in youth with disabilities. Parent and youth participants independently completed one-time interviews in-person or by telephone at home or at a university medical center. Independent samples paired t tests were used to compare parent and youth group mean subscale scores. Agreement in scores between parent and child dyads was examined across CHQ subscales using Pearson product moment correlations. Results: Parent and youth group mean scores differed significantly for Physical Functioning (t = -2.64, P = 0.01), Role/Social-Physical (t = -3.02, P = 0.004), Mental Health (t = -2.30, P = 0.03), Self Esteem (t = -2.07, P = 0.04), and Family Activities (t = -2.17, P = 0.04). In each case, parent scores were lower than youth scores. Correlations between scores for parent and child dyads were strong for Bodily Pain (r = 0.52, P = 0.01), Mental Health (r = 0.65, P = 0.001), and Self Esteem (r = 0.62, P = 0.001). The coefficients for the remaining CHQ scales were weak and most were positive. Conclusions: Parent and youth perceptions of HRQL in this group of children with CP were discordant in several domains. As predicted, when differences were found, parents' scores were lower than youths' scores. However, contrary to prediction, the associations between parent and youth scores were strongest for the more subjective CHQ scales. Also, while some of the associations were strong, the majority of associations were weak. Clinical Relevance: Parent and youth reports of youth HRQL appear to differ in many ways, suggesting that a thorough assessment of youth HRQL should include assessments from both sources.