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A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research

Publication date: January 2020

Source: Research in Developmental Disabilities, Volume 96

Author(s): A.C. Alves-Nogueira, N. Silva, H. McConachie, C. Carona

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.

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Posted in: Meta-analyses - Systematic Reviews on 11/30/2019 | Link to this post on IFP |
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