Changes in gross motor function and health-related quality of life in adults with cerebral palsy: an 8-year follow-up study.

OBJECTIVE: To describe changes in gross motor function and health-related quality of life (HRQOL) in adults with cerebral palsy (CP). DESIGN: An 8-year follow-up survey. SETTING: Participants who completed the baseline survey in 2003 were invited. PARTICIPANTS: The sample of adults with CP (N=54; response rate=37%) included a "younger group" (group 1; n=31; age, 23-27y; 15 women) and an "older group" (group 2; n=23; age, 33-42y; 10 women). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Gross Motor Function Classification System (GMFCS), Self-Rated Health (SRH), the Health Utility Index Mark III (HUI3), and the Assessment of Quality of Life (AQoL). RESULTS: Eight years after the initial survey, 27% of the participants in the combined group had deteriorations on the GMFCS, 52% on the SRH, 44% on the HUI3, and 25% on the AQoL. Members of group 1 reported stable scores as they made the transition to adulthood, while many of the group 2 members experienced declines, with relative risk of 1.47 (95% confidence interval [CI], 0.16-2.24) on the GMFCS, 1.36 (95% CI, 0.83-2.23) on the SRH, 1.19 (95% CI, 0.66-2.15) on the HUI3, and 3.17 (95% CI, 1.12-9.00) on the AQoL. CONCLUSIONS: Although much attention has focused on the transitions of persons with CP during their late teens and early 20s, this research found that deteriorations in the GMFCS levels and the HRQOL were most evident in adults in their late 20s and 30s. More detailed longitudinal studies are required to evaluate the longer-term health outcomes among persons with CP into their 30s and beyond.