Longitudinal validation of the Caregiver Priorities and Child Health Index of Life with Disabilities in a Dutch sample of nonambulatory children with severe disabilities

Abstract

Background: The purpose of this study was to evaluate the longitudinal validity of the Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), a health-related quality of life instrument for nonambulatory children with severe motor disabilities and accompanying disorders. Methods: The effect of two interventions, Botox injections in the hip region and percutaneous endoscopic gastrostomy, was followed over time. Caregivers (n = 38) of nonambulatory children (26 boys, 12 girls; mean age: 9 years, 5 months [4 years, 9 months]) with severe disabilities completed the questionnaire prior to the intervention, at 3 months and 6 months follow up. Seven a priori hypotheses were formulated. Longitudinal validity was analysed by a paired t test of the pre-post scores and correlation analysis between the change-scores and two external criteria: a caregivers' perceived change in health-related quality of life of the child questionnaire and a general health-related quality of life instrument. Results:The results reported here follow completely the pattern we hypothesized for four analyses and partially in the remaining three. In the Botox group, the mean change-score at 3 months was 6.9 points (p < 0.05), which exceeds the minimal clinically important difference of 5.8 points. At 6 months, the effect was diminished to 4.5 points, in line with the temporary effect of Botox. There were moderate positive correlations between the change-scores and an external criterion (Spearman's rho: 0.46-0.58). Conclusions: This study indicates that the CPCHILD Dutch version has sufficient longitudinal validity statistically and clinically in nonambulatory children with severe disabilities.

Assessing the reliability and validity of a health‐related quality of life instrument, CPADULT, in a Dutch sample of adults with severe disabilities who are non‐ambulatory

“…The underrepresentation of men (fathers and male DSPs) might have influenced the results, given that the views of the caregivers were incorporated in completing the proxy-measure. As indicated by previous studies (Narayanan et al, 2006;Zalmstra et al, 2015Zalmstra et al, , 2019, however, mothers are more likely to participate. It is also known that the majority of DSPs are women.…”

Development of algorithms for estimating the Child Health Utility 9D from Caregiver Priorities and Child Health Index of Life with Disabilities

“…The GMFCS classifies motor function in CP, ranging from level I (independent walking) to level V (children are dependent on wheeled mobility and have limited head and trunk control). The CPCHILD has shown to be one of the strongest outcome measures with the strongest psychometric properties and clinical utility for children with CP [ 17 , 18 ]. The CPCHILD questionnaire gathers information pertaining to the previous two weeks.…”

Supported‐standing interventions for children and young adults with non‐ambulant cerebral palsy: A scoping review

“…One study (high risk of bias) conducted a cost‐effectiveness analysis comparing standard‐of‐care standing with the Innowalk and concluded that although societal and health care costs were greater for the Innowalk, benefits were also greater 52 . However, the reported increase in health‐related quality of life was still less than the minimal clinically important difference 90 and may be within measurement error 91 . No other studies exploring costs or cost‐effectiveness were identified.…”