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, Ní Cheallaigh, C, Kall, M, Anderson, J, Sullivan, A K and 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. a214 1-10. ISSN 1477-7525

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Abstract

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.

Item Type: Article
Keywords: HIV, Implementation, Outcomes, PROMs, Person-centred
Schools and Departments: School of Education and Social Work > Social Work and Social Care
SWORD Depositor: Mx Elements Account
Depositing User: Mx Elements Account
Date Deposited: 13 Aug 2020 06:50
Last Modified: 13 Aug 2020 07:01
URI: http://sro.sussex.ac.uk/id/eprint/93047

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