Predictors of Parent-Reported Health-Related Quality of Life in Young Children with Early Brain Damage and Severe Motor Dysfunction

TL;DR

This study identifies factors that predict parents' reports of quality of life in young children with brain damage and motor issues.

Contribution

The study provides new insights into which functional skills most strongly predict HRQOL in this specific population.

Findings

Better adaptive skills and gross motor function were the strongest predictors of higher HRQOL.

Postural control and communication also predicted higher parent-reported HRQOL.

The findings support a multidimensional understanding of health aligned with the ICF-CY framework.

Abstract

Background/Objectives: This cross-sectional study aimed to identify predictors of parent-reported health-related quality of life (HRQOL) in young children with early brain damage and severe motor dysfunction. It used baseline data from the PIH Multi Study, a randomized controlled trial evaluating an intensive, family-centered habilitation program for preschool children and their parents. Methods: Parent-reported HRQOL were measured using the CPCHILD questionnaire. Potential predictors included adaptive function (PEDI-CAT), gross motor function (GMFM-66), postural control and balance (ECAB), and communication function (FOCUS). These were selected to reflect the domains of the ICF-CY framework. Data were collected by professionals and by parents. Linear regression analyses were conducted to identify significant predictors. Results: Analyses included 65 children. Better adaptive skills, gross motor function, postural control, and communication all predicted higher parent-reported HRQOL. Adaptive skills—particularly in self-care and mobility—and gross motor function emerged as the strongest predictors. Conclusions: The study highlights the importance of targeting basic functional skills in early habilitation efforts for children with severe disabilities. The findings support a multidimensional understanding of health in line with the ICF-CY framework and underline the value of early, individualized, and family-centered interventions. Future research should investigate these predictors longitudinally and explore ways to integrate children’s own perspectives in assessment of HRQOL.

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