Summary: The CPCHILD Questionnaire is a valid measure of HRQL for children with severe CP. The CPCHILD was tested for responsiveness following scoliosis surgery for this population in a prospective longitudinal cohort study. The CPCHILD was shown to be sensitive to change at 6 and 12 months, with significant improvements in total scores and domains of Positioning & Transfers; & Quality of Life. The CPCHILD can be used to measure the effectiveness of spine interventions for this population.
Introduction: The Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire is a valid measure of comfort, health & well being, ease of caregiving and quality of life of children with severe disabilities. The purpose of this study was to establish whether the CPHILD is sensitive to change (responsive) in a cohort of children with CP undergoing scoliosis surgery.
Methods: Parents (n=156) of 62 girls & 94 boys (Mean age: 14y8m) with severe CP completed the CPCHILD questionnaire at baseline in an international multi‐centred cohort study; 120 of 156 underwent surgery. Responsiveness of the CPCHILD was evaluated in 62 patients at 6 months & 47 patients at 12 months after surgery, using i) Paired t‐test of the pre‐post scores; ii.) Standardized Response Mean (SRM); & iii.) Correlation of change in CPCHILD domain & total scores with external verification criteria measured as parents' perceived change on a 5 point ordinal scale in each of four domains (QOL; comfort; health; ease of caregiving).
Results: 92% were non‐ambulant; mean Cobb angle was 85° (SD 29°); The mean pre‐op total CPCHILD score was 49.9 (SD:14.7; Range:17.9 ‐ 83.6). The post‐op total CPCHILD score was 53.2 (Range:24.6 ‐ 83.1) at 6 months and 54.7 (Range: 24.4 ‐ 82.3) at 12 months; with a mean difference from pre‐op of 3.3% points (p = 0.04) & 5.4% points (p= 0.004) at 6 & 12 months respectively. At 6 months there were significant improvements in Positioning/Transfers (5.4%; p=0.01) & Overall QOL (6.4%; p = 0.07) which were larger at 12 months Positioning/Transfers (9.7%; p <0.001); Health (6.5%; p=0.08) & Overall QOL (9.1%; p=0.04). The SRM for these domains were 0.26, 0.60, 0.26 and 0.31 respectively; and 0.44 for the total score. There were poor to moderately positive correlations (0.02 ‐ 0.37) between the changes in the domain scores and external criteria ratings.
Conclusion: The CPCHILD is sensitive to change following scoliosis surgery for children with severe CP and is able to measure significant improvements in Total and some domain scores at 6 & 12 months following surgery.
Significance: The CPCHILD can be used as a meaningful outcome measure of the effectiveness of interventions for scoliosis in children with severe cerebral palsy.