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

Abstract

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.

Keywords:

• Cerebral palsy
• longitudinal trajectories
• monitoring
• participation
• reference percentiles

Acknowledgements

We acknowledge additional On Track Study Team members including academic researchers: Doreen Bartlett, Sally Westcott McCoy, Lynn Jeffries, Alyssa Fiss, and Jan Willem Gorter; Canadian project coordinator Barb Galuppi; US project coordinator Monica Smersh; and parent researchers: Lisa Diller, Paula Drew, Nancy Ford, Marquitha Gilbert, tina hjorngaard, Kimberly Rayfield, and Barbara Sieck Taylor. We thank the participating children and families, whose continued involvement made this study possible. We also acknowledge the important contributions of the regional coordinators as well as the 90 therapists across North America who assessed children during the course of the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The research study was funded by: The Canadian Institutes of Health Research, MOP-119276 and The Patient-Centered Outcomes Research Institute, CE-12-11-5321. The statements presented in this work are solely the responsibility of the authors and do not necessarily represent the views of either the Canadian Institutes of Health Research or the Patient-Centered Outcomes Research Institute (PCORI), including its Board of Governors or Methodology Committee.

Notes on contributors

Lisa A. Chiarello

Lisa A. Chiarello, PT, PhD, FAPTA, is a Physical Therapist, Professor in the Department of Physical Therapy and Rehabilitation Sciences at Drexel University, and an Associate Member of CanChild.

Robert J. Palisano

Robert J. Palisano, PT, ScD, FAPTA is a Distinguished Professor in the Department of Physical Therapy and Rehabilitation Sciences at Drexel University, and a Scientist at CanChild.

Lisa Avery

Lisa Avery, MSc is Statistics Lecturer at the University of Otago.

Steven Hanna

Steven E. Hanna, PhD is a Professor in the Department of Health Research Methods, Evidence, and Impact at McMaster University.