Longitudinal Trajectories and Reference Percentiles for Participation in Family and Recreational Activities of Children with Cerebral Palsy

AIM: To create longitudinal trajectories and reference percentiles for frequency of participation in family and recreational activities for children with cerebral palsy (CP) by Gross Motor Function Classification System (GMFCS) level. METHODS: 708 children with CP 18-months to 12-years of age and their families participated in two to five assessments using the GMFCS and Child Engagement in Daily Life Measure. Data were analyzed using mixed-effects models and quantile regression. RESULTS: Longitudinal trajectories depict the relatively stable level of frequency of participation with considerable individual variability. Average change in the frequency of participation scores of children from 2-12 years of age by GMFCS level varied from 3.7 (GMFCS level I) to - 9.0 points (GMFCS level V). A system to interpret the magnitude of change in percentiles over time is presented. CONCLUSIONS: Longitudinal trajectories and reference percentiles can inform therapists and families for collaboratively designing services and monitoring performance to support children's participation in family and recreational activities.