Purpose: To assess the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)-Dutch Version, a proxy measure of health status and well-being of non-ambulatory children with cerebral palsy (CP).
Methods: Parents (n = 66) of 47 boys/19 girls between 5 and 18 years with CP (GMFCS IV-V) participated. To assess the reliability each domain and the total measure was tested for internal consistency, test-retest and inter-rater reliability. Known-groups validity of the CPCHILD-DV was assessed by comparing mean scores of clinically distinct subgroups and convergent validity by correlating the CPCHILD-DV with the TNO-AZL Preschool Children Quality of Life (TAPQOL).
Results: The mean CPCHILD-DV total score was 52.0 (SD11.5). Test-retest reliability of the total score as assessed by intraclass correlations (ICC) was 0.73 (domains: 0.55-0.80). For the inter-rater reliability the ICC was 0.64 (domains: 0.58-0.90); the Cronbach's alpha's ranged from 0.60 to 0.95. The CPCHILD score could differentiate between GMFCS levels and between subgroups of cognitive level in the domain "communication and social interaction". There were moderate significant correlations (range r(s): 0.31-0.50) between sections of CPCHILD-DV and TAPQOL.
Conclusions: The CPCHILD-DV has sufficient reliability and validity as a proxy measure of health status and well-being of non-ambulatory children with CP.
Keywords: Caregiver Priorities and Child Health Index of Life with Disabilities; children; health related quality of life; non-ambulatory children with cerebral palsy; validation.