Proxy- and self-report evaluation of quality of life in cerebral palsy: Using Spanish version of CPQOL for Children and adolescents.
Parents reliably rate CP pain and social domains lower than their kids do—collect both CP-QOL forms to spot hidden problems.
01Research in Context
What this study did
Aza et al. (2024) asked 74 Spanish children with cerebral palsy and their parents to fill out the Spanish CP-QOL. The survey covers eight life areas like school, friends, and pain.
The team wanted to map each child's quality-of-life profile and see where parent and child scores disagreed.
What they found
Parents and kids gave different scores on almost every scale. Parents rated pain, feelings, and social acceptance lower than their children did.
The only area where parents scored higher was Access to Services. No child or parent group reported "high" quality of life across the board.
How this fits with other research
Longo et al. (2017) saw the same pattern: children with CP rate their own lives higher than parents do. The new Spanish data repeat that finding, strengthening the case for always collecting both views.
Across other diagnoses, the gap flips. Spriggs et al. (2015) and Schmidt et al. (2010) found adults with intellectual disability score their own lives higher than staff or family do. The direction of the gap seems to depend on who fills the form and how well they can self-report.
Green et al. (2020) urged researchers to pair self- and proxy reports in CP studies. Aza et al. (2024) now supply the child-sized evidence that backs up that call.
Why it matters
If you write goals or track outcomes for kids with CP, collect both CP-QOL forms. Parents give a clearer picture of pain and social acceptance, while the child’s own voice is best for Access to Services. Use the rater gap as a signal: big differences may point to unmet needs you can target in treatment.
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02At a glance
03Original abstract
BACKGROUND: Promoting quality of life (QoL) is one of the main goals in interventions carried out with children and adolescents with cerebral palsy (CP). AIMS: The aim of this study was to analyze the determinants of QoL in children with CP, including evaluations by the children themselves and their parents, and to identify discrepancies between evaluators. METHODS AND PROCEDURES: The adapted Spanish version of the Cerebral Palsy Quality of Life (CP-QOL) for children and adolescents (self-report and primary caregiver-reports versions) was applied to a sample of 74 children with CP and their respective parents (totaling 222 participants), as well as instruments to measure functioning (i.e., GMFCS, MACS, CFCS and EDACS). The average age of the children was 12.50 (SD=4.07), with a higher number of boys (55.7 %). OUTCOMES AND RESULTS: The lowest QoL levels were found in the Functional dimension in both assessments (Mchildren/adolescents=70.21, Mparents=58.14). For children, the highest rated dimension was Social Well-being (M=74.54), while for parents it was School (M=71.03). The degree of agreement between evaluators was low in almost all dimensions (ICC≤.40). More satisfactory predictive models were constructed from the evaluations carried out by parents, except in the case of the Access to Services dimension, with functioning measures being the main predictors of QoL levels. CONCLUSIONS AND IMPLICATIONS: The CP-QOL in its two available versions is a useful and specific instrument for assessing QoL in children with CP in both research and professional fields.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104844