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

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.

Are quality of care instruments inclusive of older people living with dementia? A scoping review in long-term care settings.

More than half of older people in long-term care facilities have dementia. Little is currently known about the methods and instruments which can be used to capture the perspectives of older people, including those with dementia, regarding the quality of care provided in such facilities. The main aims of this scoping review were two-fold. Firstly, to identify quality of care instruments that have been applied in long-term care settings. Secondly, to evaluate how these instruments have been developed and validated, particularly in terms of their applicability among older people with dementia. Seven databases (Medline, Web of Science, Scopus, ProQuest, Ageline, CINHAL and google scholar) were searched for relevant literature without any date limit. We used quality criteria adapted from COSMIN (Consensus-based Standards for the selection of health status Measurement Instruments) guidelines to assess the psychometric properties of the instruments. The search identified 16 quality of care instruments which had been used in long-term care settings. Of which, two (12.5%) were specifically designed for older people with dementia, and three instruments (18.7%) were modified for use with older people with mild to moderate dementia. A variety of methods were used to develop the identified instruments including literature reviews, qualitative interviews, expert panel reviews, pre-testing and piloting with older people. None of the identified instruments had been subjected to comprehensive psychometric assessment. Most instruments for assessing quality of care in long term care settings lack alternative communication techniques tailored to people with dementia. This review highlights the need for more rigorous psychometric testing of existing instruments for assessing quality of care in long-term care settings. Several existing measures show promise and may be taken forward for further testing and development for widespread application with older people, including those living with dementia, in long term care settings.