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.ObjectivesTo 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.DesignCross-sectional survey.SettingParticipants were identified from 6 children's treatment centers in Ontario.ParticipantsThe 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.InterventionNot applicable.Main Outcome MeasuresHealth Utilities Index (HUI3), Assessment of Quality of Life (AQoL), and Self-Rated Health (SRH).ResultsSRH was reported to be excellent or very good by 57% of youth and 46% of adults. Mean HUI3 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 HUI3 scores and 45% of the variance in AQoL scores. Age and sex were not significant predictors of health or QoL.ConclusionsThe 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.