This study describes the development and initial validation of a new disease-specific outcome measure of health status and burden of care in children with severe cerebral palsy. The instrument, Caregiver Priorities and Child Health Index of Life with Disabilities(CPCHILD), has thirty-six items spanning six domains:
Personal care/ADLs, Positioning/Mobility, Communication/Social interaction, Comfort/Emotions &
Behaviour, Health, Quality of life and additionally Caregiver’s perspective on the Importance of these items to the child’s quality of life. The CPCHILD is a reliable and valid measure of caregivers’ perspectives on the health status, functional limitations, and well-being of children with severe cerebral palsy. Develop and validate a disease-specific measure of health status and well-being of children with severe cerebral palsy. The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was constructed from recommendations of caregivers, health care providers, and review of other measures. The CPCHILD has thirty-six items spanning six domains. Items are rated on an ordinal scale. Standardized scores (0–100) are reported for each domain and in total. Primary caregivers(n=77) of children(5–18yrs) with cerebral palsy, categorized by the Gross Motor Function Classification System (GMFCS) level completed the CPCHILD. Caregivers of children with severe cerebral palsy(GMFCS-IV &
V), also completed the PEDI, the CHQ, and a second administration of the CPCHILD two weeks after the first. The mean CPCHILD scores for children with severe cerebral palsy(GMFCS-V) was fifty-nine (Range:35–93) and did not demonstrate the floor effects of the PEDI and CHQ. The mean CPCHILD scores for children in GMFCS levels I to V were 22.0, 38.2, 23.0, 44.5.8 and 59.3 respectively (p <
0.0001 by ANOVA). Reliability was tested in the 41/52 caregivers who reported no health status change between the twoadministrations of the CPCHILD. The intraclass correlation coefficient(ICC) was 0.94(95% CI: 0.90–0.97). Children with severe cerebral palsy often undergo interventions to improve quality of life and ease burden of care. The CPCHILD seems to be a reliable and valid measure of caregivers’ perspectives on the health status, functional limitations, and well-being of these children. Further validation in a larger mutli-centred study is planned. Funding:
Paediatric Orthopaedic Society of North America (POSNA) research grant award. Bloorview MacMillan Foundation
