Self-Care Trajectories and Reference Percentiles for Children with Cerebral Palsy

Abstract

Aims: To create longitudinal trajectories and reference percentiles for performance in self-care of children with cerebral palsy (CP).

Methods: Participants were 708 children with CP, 18 months through 11 years of age and their parents residing in 10 regions across Canada and the United States. Gross Motor Function Classification System (GMFCS) levels were determined by consensus between parents and therapists. Parents’ completed the Performance in Self-Care domain of the Child Engagement in Daily Life Measure two to five times at 6-month intervals. Nonlinear mixed-effects models were used to create longitudinal trajectories. Quantile regression was used to construct cross-sectional reference percentiles.

Results: The trajectories for children in levels I, II, and III are characterized by an average maximum score between 79.6 (level I) and 62.8 (level III) and an average attainment of 90% of the maximum score between 7 and 9 years of age. The trajectories for children in level IV and V show minimal change over time. Extreme variation in performance among children of the same age and GMFCS level complicate interpretation of percentile change of individual children.

Conclusion: The findings are useful for monitoring self-care of children with CP and evaluating change for children in GMFCS levels I–III.

Keywords:

• Cerebral palsy
• self-care
• longitudinal trajectories
• reference percentiles
• child engagement in daily life measure

Acknowledgments

On Track Study Team members include academic researchers: Doreen Bartlett, Alyssa Fiss, Lynn Jeffries, and Sarah Westcott McCoy, 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 study.

Disclosure statement

The authors report no conflicts of interest. 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.

Additional information

Funding

The On Track Study was funded by: The Canadian Institutes of Health Research, MOP-119276 and The Patient-Centered Outcomes Research Institute, CE-12-11-5321.

Notes on contributors

Robert J. Palisano

Robert J. Palisano, PT, ScD, FAPTA is Associate Dean for Research, College of Nursing and Health Professions and Distinguished Professor, Department of Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, Pennsylvania, USA.

Lisa A. Chiarello

Lisa A. Chiarello PT, PhD, FAPTA is Professor, Department of Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, Pennsylvania PA.

Lisa Avery

Lisa Avery, BEng, MSc is a biostatistician, Avery Information Services Ltd, Orillia, Ontario, Canada.

Steven Hanna

Steven E. Hanna, PhD is Professor, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada.