Psychometric properties of the quality of life questionnaire for children with CP

TLDR

The study develops and evaluates the psychometric properties of a condition‑specific quality‑of‑life questionnaire for children with cerebral palsy (CP QOL‑Child). A sample of 205 primary caregivers and 53 children (aged 4–12 y) completed the CP QOL‑Child, with children distributed across GMFCS levels and caregivers also completing the CHQ, KIDSCREEN, and GMFCS measures. The CP QOL‑Child shows strong internal consistency (0.74–0.92 caregivers, 0.80–0.90 child), good 2‑week test‑retest reliability (0.76–0.89 caregivers), and convergent validity with CHQ, KIDSCREEN, and GMFCS, indicating acceptable psychometric properties. The questionnaire is freely available at http://www.deakin.edu.ac/hmnbs/chase/cerebralpalsy/cp_qol_home.php.

Abstract

This paper describes the development and psychometric properties of a condition‐specific quality of life instrument for children with cerebral palsy (CP QOL‐Child). A sample of 205 primary caregivers of children with CP aged 4 to 12 years (mean 8y 5mo) and 53 children aged 9 to 12 years completed the CP QOL‐Child. The children (112 males, 93 females) were sampled across Gross Motor Function Classification System (GMFCS) levels (Level I=18%, II=28%, III=14%, IV=11%, V=27%). Primary caregivers also completed other measures of child health (Child Health Questionnaire; CHQ), QOL (KIDSCREEN), and functioning (GMFCS). Internal consistency ranged from 0.74 to 0.92 for primary caregivers and from 0.80 to 0.90 for child self‐report. For primary caregivers, 2‐week test‐retest reliability ranged from 0.76 to 0.89. The validity of the CP QOL is supported by the pattern of correlations between CP QOL‐Child scales with the CHQ, KIDSCREEN, and GMFCS. Preliminary statistics suggest that the child self‐report questionnaire has acceptable psychometric properties. The questionnaire can be freely accessed at http://www.deakin.edu.ac/hmnbs/chase/cerebralpalsy/cp_qol_home.php