The Health and Quality of Life Outcomes Among Youth and Young Adults With Cerebral Palsy

Young NL, Rochon TG, McCormick A, Law M, Wedge JH, Fehlings D. The health and quality of life outcomes among youth and young adults with cerebral palsy. OBJECTIVES: To describe the health and quality of life (QoL) of youth and young adults who have cerebral palsy (CP), and to assess the impact of 3 key factors (severity, age, and sex) on these outcomes. DESIGN: Cross-sectional survey. SETTING: Participants were identified from 6 children's treatment centers in Ontario. PARTICIPANTS: The sample of participants (N=199) included youth (n=129; age, 13-17y) and adults (n=70; age, 23-33y) with a broad range of severity: 35% mild, 19% moderate, and 47% severe. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Health Utilities Index (HUI(3)), Assessment of Quality of Life (AQoL), and Self-Rated Health (SRH). RESULTS: SRH was reported to be excellent or very good by 57% of youth and 46% of adults. Mean HUI(3) scores were .30 for youth and .31 for adults. Mean AQoL scores were .28 for youth and adults. Severity of CP in childhood predicted 55% of the variance in HUI(3) scores and 45% of the variance in AQoL scores. Age and sex were not significant predictors of health or QoL. CONCLUSIONS: The observed health and QoL scores were much lower than those previously reported in the literature. This is likely a result of the inclusion of those with severe CP. The scores for youth were similar to those for adults and suggest that health and QoL outcomes were relatively stable across the transition to adulthood. Youth and adults with CP have limited health status and will require health care support throughout their lives to help them optimize their well being. Longitudinal follow-up studies are essential to understand better the patterns of health in this population over time.