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Predictors of Parent-Reported Health-Related Quality of Life in Young Children with Early Brain Damage and Severe
Siri Johnsen1,2, Kristian Sørensen1,2, Jon Sverre Skranes2
1Department for Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, 7113 Trondheim, Norway.
Insights
Parent-reported health-related quality of life in children with early brain damage is predicted by adaptive skills, motor function, and communication. Early intervention focusing on these functional skills is crucial for improving outcomes.
Area of Science:
- Pediatrics
- Rehabilitation Medicine
- Developmental Neuroscience
Background:
- Early brain damage and severe motor dysfunction significantly impact young children's health-related quality of life (HRQOL).
- Understanding predictors of HRQOL is essential for developing effective interventions.
Purpose of the Study:
- To identify predictors of parent-reported HRQOL in young children with early brain damage and severe motor dysfunction.
- To inform early habilitation strategies based on functional skill development.
Main Methods:
- Cross-sectional analysis of baseline data from the PIH Multi Study.
- Parent-reported HRQOL measured by CPCHILD questionnaire.
- Predictors assessed included adaptive function (PEDI-CAT), gross motor function (GMFM-66), postural control (ECAB), and communication (FOCUS), aligned with the ICF-CY framework.
Main Results:
- Sixty-five children were included in the analysis.
- Better adaptive skills (especially self-care and mobility), gross motor function, postural control, and communication were significant predictors of higher HRQOL.
- Adaptive skills and gross motor function were the strongest predictors.
Conclusions:
- Targeting basic functional skills is vital in early habilitation for children with severe disabilities.
- Findings support a multidimensional health perspective (ICF-CY) and the value of early, individualized, family-centered interventions.
- Longitudinal research and incorporating children's perspectives are recommended for future studies.
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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