A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research. (January 2020)

• Record Type: Journal Article
• Authors: Alves-Nogueira, A.C.; Silva, N.; McConachie, H.; Carona, C.
• Is Part Of: Research in developmental disabilities. Volume 96(2020)
• Publication Date: 2020-01
• Subjects: Quality of life -- Cerebral palsy -- Adulthood -- Assessment; Developmental disabilities -- Periodicals; Developmentally disabled -- Research -- United States -- Periodicals; Developmentally disabled children -- Education -- Research -- United States -- Periodicals; Developmental Disabilities -- Periodicals; Disabled -- Periodicals; Mental Retardation -- rehabilitation -- Periodicals; Personnes atteintes de troubles du développement -- Recherche -- États-Unis -- Périodiques; Enfants atteints de troubles du développement -- Éducation -- Recherche -- États-Unis -- Périodiques; Développement, Troubles du -- Recherche -- États-Unis -- Périodiques; 616.858800
• DOI: 10.1016/j.ridd.2019.103514
• Languages: English
• ISSNs: 0891-4222

Abstract

Highlights: QoL outcomes tend to decline when people with CP enter adulthood. Age-related specificities ensure the developmental validity of QoL assessments. Proxy-reports are preferred for QoL assessment in the most severely impaired cases. Modifiable mechanisms and pathways linked to QoL remain understudied for CP. A family perspective is likely to improve QoL assessments across the lifespan. 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.