Abstract
Objective: Many outcome measures assess function of children with cerebral palsy (CP), but establishing meaningful clinical change remains challenging. This study explored correlations between subjective status ratings in several functional domains, made by children, parents, and medical professionals. The ratings were compared with three outcome measures in preparation for longitudinal work to establish minimal clinically important change.
Method: Children were assessed with the Gross Motor Function Measure (GMFM), Pediatric Evaluation of Disability Inventory (PEDI), and Cerebral Palsy Quality of Life Questionnaire for Children (CP-QOL). Respondents provided Likert scale and Linear Analogue Scale ratings of gross motor function, self care, social function, quality of life, and overall function. Correlations were calculated for outcome measure scores and ratings.
Results: 122 children with CP across all GMFCS and MACS levels, 79 male, aged 8.1 ± 2.9 years generated status ratings by 27 child reports, 122 parent reports, and 110 medical professional reports. Most ratings were moderately to highly correlated between parents and medical professionals. Outcome measure scores were frequently significantly correlated with pertinent ratings from medical professionals and parents but usually not with child ratings.
Conclusions: Parents and medical professionals have similar perceptions of gross motor, self-care, quality of life, and overall status for children with CP and these perceptions correlate with standard outcome measures, but often do not agree with children's ratings. Longitudinal use of subjective status ratings from parents and professionals should contribute to establishing minimal clinically important differences for CP outcome measures.