A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research.
Adult CP quality-of-life studies often mismatch concept and measure—use clear definitions, add proxy reports, and analyze by age group.
01Research in Context
What this study did
Green et al. (2020) looked at every paper that tried to measure quality of life in adults with cerebral palsy. They wanted to see if the tools were any good.
The team checked how each study defined quality of life and how they collected the data. They also noted who answered the questions: the adult with CP, a parent, or a staff member.
What they found
Most adult CP studies used fuzzy definitions and mismatched tools. Many picked scales made for kids or for other disabilities.
Proxy reports were common, but few studies checked if those proxies agreed with the adults’ own views. Age groups were lumped together, hiding real differences.
How this fits with other research
Aza et al. (2024) extends the same worry to kids. They gave both children and parents the Spanish CP-QOL and got different scores, proving the adult call for double-checking proxies is needed at every age.
Longo et al. (2017) and Chen et al. (2014) already showed that parent and child scores in CP don’t line up. Green et al. (2020) now says the gap keeps going after the 18th birthday, so BCBAs should keep asking both sources.
Spriggs et al. (2015) and Schmidt et al. (2010) found the same proxy-low-bias in adults with intellectual disability. The pattern is cross-diagnosis: proxies usually rate QoL lower than the adult himself.
Why it matters
If you write goals around ‘quality of life’ for adult clients with CP, first spell out what you mean and pick a scale built for adults. Collect both self and proxy forms, then graph the gap. Split data by age band; mixing 25-year-olds with 65-year-olds hides change. These steps turn a vague buzzword into numbers you can track and treat.
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02At a glance
03Original abstract
BACKGROUND AND AIMS: Little is known about the quality of life (QoL) of adults with cerebral palsy (CP). This systematic review aimed to examine the extent to which methodological best practices have been applied to achieve valid and informative QoL assessments for this population. METHODS AND PROCEDURES: Systematic search identified 1097 non-duplicated, quantitative articles assessing self- and/or proxy-reported QoL in samples of adults with CP. Eighteen studies were included and data extraction was conducted for sampling characteristics, selection of informants (self- and proxy-reports), adequacy of administered measures, and examination of age-related specificities. OUTCOMES AND RESULTS: The results revealed discrepancies between conceptual definitions of QoL and their measurement approaches in CP. Most papers relied on self-reports. Most studies were cross-sectional and often based on relatively small samples; the variable of age was considered inconsistently in statistical analyses. CONCLUSIONS AND IMPLICATIONS: Future strategies to improve the validity and applicability of QoL assessments of adults with CP would include: using a clear definition of QoL aligned with the measurement employed; considering proxy-reports whenever appropriate, to encompass larger samples and a wider range of ability; and using age-stratified analyses, in order to deepen understanding of potentially modifiable variables and paths linked to QoL outcomes.
Research in developmental disabilities, 2020 · doi:10.1016/j.ridd.2019.103514