Multidimensional Analysis of Parent-Perceived Quality of Life in Children with Cerebral Palsy: A Cross-Sectional Study

TL;DR

Parents of children with cerebral palsy report lower quality of life when children undergo certain medical treatments or therapies, with functional activity being a key predictor of perceived well-being.

Contribution

This study identifies specific medical interventions and functional measures that significantly impact parent-perceived quality of life in children with cerebral palsy.

Findings

Parents of children using AFOs, botulinum toxin, pelvic surgery, or intensive physical therapy report lower scores in social, emotional, and functional well-being domains.

PEDI-CAT Activity is the strongest predictor of the 'Feelings about Functioning' domain, explaining 62% of its variance.

Functional performance and manual ability are key drivers of quality of life in children with cerebral palsy.

Abstract

What are the main findings?
•Parents of children using AFOs, receiving botulinum toxin, undergoing pelvic surgery, or engaging in intensive physical therapy (>2 h/week) reported significantly lower scores in multiple domains of quality of life, including “Social well-being”, “Emotional well-being”, “Feelings about functioning”, and “Family health”.•The ‘Feelings about Functioning’ domain was 62% explained by motor and activity-related measures (GMFM-88, PEDI-CAT Activity, and PEDI-CAT Social/Cognitive), with PEDI-CAT Activity emerging as the strongest predictor.

Parents of children using AFOs, receiving botulinum toxin, undergoing pelvic surgery, or engaging in intensive physical therapy (>2 h/week) reported significantly lower scores in multiple domains of quality of life, including “Social well-being”, “Emotional well-being”, “Feelings about functioning”, and “Family health”.

The ‘Feelings about Functioning’ domain was 62% explained by motor and activity-related measures (GMFM-88, PEDI-CAT Activity, and PEDI-CAT Social/Cognitive), with PEDI-CAT Activity emerging as the strongest predictor.

What are the implications of the main findings?
•The association between specific medical interventions and lower quality-of-life scores underscores the need for holistic care strategies that address psychosocial well-being alongside physical treatment in children with CP.•Identifying PEDI-CAT Activity as the strongest predictor of the ‘Feelings about Functioning’ domain highlights the importance of prioritizing functional activity in rehabilitation programs to enhance perceived quality of life.

The association between specific medical interventions and lower quality-of-life scores underscores the need for holistic care strategies that address psychosocial well-being alongside physical treatment in children with CP.

Identifying PEDI-CAT Activity as the strongest predictor of the ‘Feelings about Functioning’ domain highlights the importance of prioritizing functional activity in rehabilitation programs to enhance perceived quality of life.

Background/Objectives: To analyze the parent-perceived quality of life (QoL) in children with cerebral palsy (CP) and to study the relationship between sociodemographic and clinical factors and this perception, under the perspective of the International Classification of Functioning, Disability and Health (ICF). Methods: A cross-sectional study was conducted with 95 participants (ages 5–19 years) with CP. Participants’ parents were asked about sociodemographic and clinical characteristics and compiled Cerebral Palsy Quality of Life (CP-QoL) and Pediatric Disability Inventory-Computer Adaptive Test (PEDI-CAT). Participants were assessed and classified into the following functional domains: gross motor function (GMFM-88, GMFCS), manual ability (MACS), eating and drinking abilities (EDACS), and communication function (CFCS). Correlations between CP-QoL domains and variables were investigated using Spearman’s correlation coefficient and multivariate predictive models were used to investigate the variables predicting CP-QoL scores for each domain. Results: A total of 95 children with a mean age of 12.4 ± 3.5 years (range 5–19 years) were included. Participants demonstrated moderate-high GMFM-88 level (228.8 ± 44.7) and high functional performance across PEDI-CAT domains: Activity (57.2 ± 5.1), Mobility (63.1 ± 5.6), and Social/Cognitive (70.2 ± 4.3). Parent-perceived QoL was significantly higher when children did not require AFOs, botulinum toxin, or recent hospitalizations, and lower among children who attended physical therapy >2 h/week. Moderate correlations were consistently found between the ‘Feelings about Functioning’ domain and functional variables, being positive for GMFM-88 and all PEDI-CAT domains, and negative for GMFCS, MACS, EDACS and CFCS. That domain of CP-QoL was best explained by the regression model (R2 = 0.619, p < 0.001), with the combination of three variables: GMFM-88, PEDI-CAT Activity and PEDI-CAT Social/Cognitive. Among them, PEDI-CAT Activity was the strongest predictor (β = 0.1436). Conclusions: In children with CP, to enhance family well-being, interventions should prioritize social participation and carefully balance the intensity and frequency of therapy against family burden and daily life demands, as QoL is primarily driven by manual ability and functional performance.