Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, GPO Box 2100, Adelaide, SA, 5001, Australia.
Qual Life Res. 2023 Dec;32(12):3291-3308. doi: 10.1007/s11136-023-03450-w. Epub 2023 Jun 21.
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.
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.
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.
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.
对于有感官障碍、沟通困难或认知能力改变的人来说，使用传统的基于文本的生活质量（QoL）工具进行自我报告可能会很困难。适应沟通技巧，如易读技巧，或使用图片，可以为广泛的人群消除参与的障碍。本综述旨在确定已发表的研究报告，这些研究报告报告了用于测量生活质量的适应性沟通方法，以及在成年人群体中开发和验证这些方法所使用的方法。
使用系统评价和荟萃分析（PRISMA）扩展的首选报告项目进行文献范围综述清单。
最初的搜索策略确定了 13275 篇文章进行筛选，有 264 篇文章确定进行全文审查。其中 243 篇文章被排除在外，导致 21 项研究被纳入。大多数研究集中在开发工具（12 项研究）或开发与验证或心理测量测试的某些方面相结合（7 项研究）。该综述确定了 19 种不同的工具，其中 13 种是从以前开发的通用或特定疾病生活质量工具中开发的，主要是失语症（7 项研究）和残疾（4 项研究）。大多数经过修改的工具包括对原始问题和反应类别进行的调整。
本范围综述确定的研究表明，已经成功应用了几种方法，例如用于中风后患有失语症的人和有残疾的人，这些方法可能可以适应更多样化的人群。需要采取一致和跨学科的方法来开发和验证沟通无障碍的生活质量工具版本，以支持广泛应用，从而减少对代理评估者的依赖，并促进多个消费者群体和部门的自我评估生活质量。
