The modified Care and Comfort Questionnaire score in children with severe cerebral palsy : reference values and the associated floor and ceiling effects.

Abstract

The modified Care and Comfort Hypertonicity Questionnaire (mCCHQ) is a validated caregiver-reported outcome measure for children with Gross Motor Function Classification System (GMFCS) IV/V cerebral palsy (CP). This study aimed to establish reference values for the mCCHQ and determine if a floor or ceiling effect exists. This was a population-based cross-sectional study of GMFCS IV/V children enrolled in the CP Integrated Pathway Scotland (CPIPS) national surveillance programme. At each CPIPS assessment, age, sex, GMFCS and CP subtype were recorded, and caregivers were asked to complete the mCCHQ. The Scottish Index of Multiple Deprivation (SIMD) was calculated according to the child's home address. The mCCHQ scores were available from 685 clinical assessments of 405 GMFCS IV/V children across four years (2017 to 2020). The mean age at assessment was 8.3 years (2 to 16). Overall, 40% (n = 163) were GMFCS IV and 60% (n = 242) GMFCS V. The mean total mCCHQ score was 52.1 (SD 12.7; 15 to 92). The mean scores for the personal care, positioning/transferring, comfort, and interaction/communication subdomains were 17.2 (SD 5.9; 6 to 36), 11.4 (SD 4.0; 1 to 24), 8.7 (SD 3.2; 0 to 20), and 14.9 (SD 4.5; 0 to 25), respectively. Although no notable floor or ceiling effect was observed for the total mCCHQ score, 13% and 15% of respondents gave the minimum possible score for the positioning/transferring and comfort subdomains, respectively, demonstrating a moderate/significant floor effect. There was no discernible trend in total mCCHQ scores across different ages. Demographic variables had limited influence on the mCCHQ score. The mCCHQ provides a valuable outcome score for quantifying the experience of caring for a child with GMFCS level IV/V CP. While it demonstrates good sensitivity and reliability, the observed floor effects in the positioning/transferring and comfort subdomains highlight areas for potential refinement.