TY - JOUR
T1 - Appraising the quality of tools used to record patient-reported outcomes in users of augmentative and alternative communication (AAC)
T2 - a systematic review
AU - Broomfield, Katherine
AU - Harrop, Deborah
AU - Judge, Simon
AU - Jones, Georgina
AU - Sage, Karen
N1 - Publisher Copyright:
© 2019, The Author(s).
PY - 2019/6/18
Y1 - 2019/6/18
N2 - 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.
AB - 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.
KW - AAC
KW - Augmentative and alternative communication
KW - Communication aids
KW - Patient-reported outcome measures
KW - PROMs
KW - Systematic review
UR - http://www.scopus.com/inward/record.url?scp=85067897209&partnerID=8YFLogxK
U2 - 10.1007/s11136-019-02228-3
DO - 10.1007/s11136-019-02228-3
M3 - Review article
C2 - 31214931
AN - SCOPUS:85067897209
SN - 0962-9343
VL - 28
SP - 2669
EP - 2683
JO - Quality of Life Research
JF - Quality of Life Research
IS - 10
ER -