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The development and cognitive testing of the positive outcomes HIV PROM: A brief novel patient-reported outcome measure for adults living with HIV

Bristowe, K.; Murtagh, F. E.M.; Clift, P.; James, R.; Josh, J.; Platt, M.; Whetham, J.; Nixon, E.; Post, F. A.; McQuillan, K.; Cheallaigh, C. Ní; Kall, M.; Anderson, J.; Sullivan, A. K.; Harding, R.

Authors

K. Bristowe

P. Clift

R. James

J. Josh

M. Platt

J. Whetham

E. Nixon

F. A. Post

K. McQuillan

C. Ní Cheallaigh

M. Kall

J. Anderson

A. K. Sullivan

R. Harding



Abstract

© 2020 The Author(s). Background: People living with HIV experience burdensome multidimensional symptoms and concerns requiring person-centred care. Routine use of patient reported outcome measures can improve outcomes. There is no brief patient reported outcome measure (PROM) that currently reflects the breadth of concerns for people living with HIV. This study aimed to develop and cognitively test a brief novel patient reported outcome measure for use within routine adult HIV care- the "Positive Outcomes"HIV PROM. Methods: Development followed the COSMIN taxonomy and guidance for relevance and comprehensiveness, and Rothrock guidance on development of valid patient reported outcome measures. The Positive Outcomes HIV PROM was developed by a steering group (people living with HIV, HIV professionals and health services researchers) using findings from a previously reported qualitative study of priority outcomes for people living with HIV. The prototype measure was cognitively tested with a purposive sample of people living with HIV. Results: The Positive Outcomes HIV PROM consists of 23 questions (22 structured, and one open question) informed by the priorities of key stakeholders (n = 28 people living with HIV, n = 21 HIV professionals and n = 8 HIV commissioners) to ensure face and content validity, and refined through cognitive testing (n = 6 people living with HIV). Cognitive testing demonstrated high levels of acceptability and accessibility. Conclusions: The Positive Outcomes HIV PROM is the first brief patient reported outcome measure reflecting the diverse needs of people living with HIV designed specifically for use in the clinical setting to support patient assessment and care, and drive service quality improvement. It is derived from primary data on the priority outcomes for people living with HIV and is comprehensive and acceptable. Further psychometric testing is required to ensure reliability and responsiveness.

Citation

Bristowe, K., Murtagh, F. E., Clift, P., James, R., Josh, J., Platt, M., …Harding, R. (2020). The development and cognitive testing of the positive outcomes HIV PROM: A brief novel patient-reported outcome measure for adults living with HIV. Health and quality of life outcomes, 18(1), Article 214. https://doi.org/10.1186/s12955-020-01462-5

Journal Article Type Article
Acceptance Date Jun 23, 2020
Online Publication Date Jul 6, 2020
Publication Date Jul 6, 2020
Deposit Date Dec 23, 2020
Publicly Available Date Mar 29, 2024
Journal Health and Quality of Life Outcomes
Print ISSN 1477-7525
Electronic ISSN 1477-7525
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 18
Issue 1
Article Number 214
DOI https://doi.org/10.1186/s12955-020-01462-5
Keywords HIV; Outcomes; PROMs; Implementation; Person-centred
Public URL https://hull-repository.worktribe.com/output/3547203
Publisher URL https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01462-5

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Copyright Statement
© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,
which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give
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The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the
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