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Quality of Life Research
Published in: Quality of Life Research 12/2023

Open Access 21-06-2023 | Aphasia | Review

A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults

Authors: Rachel Milte, Digisie Jemere, Kiri Lay, Claire Hutchinson, Jolene Thomas, Joanne Murray, Julie Ratcliffe

Published in: Quality of Life Research | Issue 12/2023

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Abstract

Purpose

Self-Reporting using traditional text-based Quality-of-Life (QoL) instruments can be difficult for people living with sensory impairments, communication challenges or changes to their cognitive capacity. Adapted communication techniques, such as Easy-Read techniques, or use of pictures could remove barriers to participation for a wide range of people. This review aimed to identify published studies reporting adapted communication approaches for measuring QoL, the methodology used in their development and validation among adult populations.

Methods

A scoping review of the literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews checklist was undertaken.

Results

The initial search strategy identified 13,275 articles for screening, with 264 articles identified for full text review. Of these 243 articles were excluded resulting in 21 studies for inclusion. The majority focused on the development of an instrument (12 studies) or a combination of development with some aspect of validation or psychometric testing (7 studies). Nineteen different instruments were identified by the review, thirteen were developed from previously developed generic or condition-specific quality of life instruments, predominantly aphasia (7 studies) and disability (4 studies). Most modified instruments included adaptations to both the original questions, as well as the response categories.

Conclusions

Studies identified in this scoping review demonstrate that several methods have been successfully applied e.g. with people living with aphasia post-stroke and people living with a disability, which potentially could be adapted for application with more diverse populations. A cohesive and interdisciplinary approach to the development and validation of communication accessible versions of QOL instruments, is needed to support widespread application, thereby reducing reliance on proxy assessors and promoting self-assessment of QOL across multiple consumer groups and sectors.
Appendix
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Metadata
Title
A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults
Authors
Rachel Milte
Digisie Jemere
Kiri Lay
Claire Hutchinson
Jolene Thomas
Joanne Murray
Julie Ratcliffe
Publication date
21-06-2023
Publisher
Springer International Publishing
Keywords
Aphasia
Stroke
Published in
Quality of Life Research / Issue 12/2023
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-023-03450-w

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