Broomfield, K., Harrop, D., Judge, S. orcid.org/0000-0001-5119-8094 et al. (2 more authors) (2019) Appraising the quality of tools used to record patient-reported outcomes in users of augmentative and alternative communication (AAC) : a systematic review. Quality of Life Research, 28 (10). pp. 2669-2683. ISSN 0962-9343
Abstract
Purpose
People who have complex communication needs (CCN), and who use augmentative and alternative communication (AAC) to help them express themselves, can be difficult to engage in decision making about their healthcare. The purpose of this review was to identify what patient-reported outcome measures (PROMs) have been employed with people who use AAC. Of the tools identified, the review aimed to establish what conceptual frameworks were used and how the reports describe completion of the PROM.
Methods
A systematic literature review was carried out. A pre-defined set of search terms was entered into five main health and education databases. Titles and abstracts were sifted for relevance. Full text papers were screened against inclusion/exclusion criteria. Data pertaining to the type and nature of the PROM used was extracted. Complementary data sources were analysed to construct a narrative synthesis of the papers identified.
Results
Within 15 papers that met the review criteria, 25 PROMs were used with people who rely on AAC comprising of 15 separate measures. The conceptual frameworks for 12 of these tools were reported from which 62 items, or concepts being measured, were identified. Following synthesis of these items, 9 conceptual domains and 11 sub-domains were generated. Limited information was available about who completed the PROM nor how much, if any, support they received.
Conclusions
No PROM that has been developed specifically for people who use AAC was identified by this review. Of the tools that have been used with people who use AAC, the concepts measured were broad and varied. The quality of reporting concerning who completed the PROM was limited, undermining the trustworthiness of many of the studies.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2019. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
Keywords: | Augmentative and alternative communication; AAC; Communication aids; Patient-reported outcome measures; PROMs; Systematic review |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 08 Jul 2019 14:10 |
Last Modified: | 07 Dec 2021 11:29 |
Status: | Published |
Publisher: | Springer Nature |
Refereed: | Yes |
Identification Number: | 10.1007/s11136-019-02228-3 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:147603 |
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