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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2020

01-12-2020 | Human Immunodeficiency Virus | Research

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

Authors: K. Bristowe, F. E. M. Murtagh, 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

Published in: Health and Quality of Life Outcomes | Issue 1/2020

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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.
Literature
1.
Simms VM, Higginson IJ, Harding R. What palliative care-related problems do patients experience at HIV diagnosis? A systematic review of the evidence. J Pain Symptom Manag. 2011;42(5):734–53.CrossRef
2.
Miners A, Phillips A, Kreif N, Rodger A, Speakman A, Fisher M, et al. Health-related quality-of-life of people with HIV in the era of combination antiretroviral treatment: a cross-sectional comparison with the general population. Lancet HIV. 2014;1(1):e32–40.PubMedCrossRef
3.
Lowther K, Selman L, Harding R, Higginson I. Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): a systematic review. Int J Nurs Stud. 2014;51:1171–89.PubMedCrossRef
4.
De Francesco D, Verboeket S, Underwood J, Bagkeris E, Wit F, Mallon P, et al. Patterns of co-occurring comorbidities in People Living with HIV. Open Forum Infect Dis. 2018;5(11):ofy272.
5.
Bristowe K, Clift P, James R, Josh J, Platt M, Whetham J, et al. Towards person-centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross-national multi-Centre qualitative study with key stakeholders. HIV Med. 2019;20(8):542–54.PubMed
6.
UNAIDS. 90–90-90: an ambitious treatment target to help end the AIDS epidemic. Geneva: UNAIDS; 2014.
7.
Justice AC, Chang CH, Rabeneck L, Zackin R. Clinical importance of provider-reported HIV symptoms compared with patient-report. Med Care. 2001;39(4):397–408.PubMedCrossRef
8.
Harding R, Molloy T. Positive futures? The impact of HIV infection on achieving health, wealth and future planning. AIDS Care. 2008;20(5):565–70.PubMedCrossRef
9.
Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC); 2001.
10.
Burton C, Entwistle V, Elliott A, Krucien N, Porteous T, Ryan M. The value of different aspects of person-centred care: a series of discrete choice experiments in people with long-term conditions. BMJ Open. 2017;7(4):e015689.
11.
The Health Foundation. Person-centred care made simple: what everyone should know about person-centred care. London: The Health Foundation; 2016.
12.
Health and Social Alliance Scotland. We’ve got to talk about outcomes 2013.
13.
Kall M, Marcellin F, Harding R, Lazarus J, Carrieri P. Patient-reported outcomes to enhance person-centred HIV care. Lancet HIV. 7(1):e59–e68.
14.
Donabedian A. Explorations in quality assessment and monitoring. Ann Arbor, Mich: Health Administration Press; 1980.
15.
Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ. The routine use of patient reported outcome measures in healthcare settings. Brit Med J. 2010;340:c186.PubMedCrossRef
16.
17.
18.
Simpson KN, Hanson KA, Harding G, Haider S, Tawadrous M, Khachatryan A, et al. Patient reported outcome instruments used in clinical trials of HIV-infected adults on NNRTI-based therapy: a 10-year review. Health Qual Life Outcomes. 2013;11:164.PubMedPubMedCentralCrossRef
19.
20.
British HIV. Association. Standards of care for people living with HIV. BHIVA; 2018.
21.
Cooper V, Clatworthy J, Harding R, Whetham J, Emerge Consortium. Measuring quality of life among people living with HIV: a systematic review of reviews. Health Qual Life Outcomes. 2017;15(1):220.PubMedPubMedCentralCrossRef
22.
23.
24.
Platt M. Developing PROMs & PREMs for HIV Care. 16th Annual Conference of the National HIV Nurses Association (NHIVNA); Cardiff 2014.
25.
Mokkink L, Terwee C, Patrick D, Alonso J, Stratford P, Knol D, et al. International consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported ouctomes: results of the COSMIN study. Journal of Clinical Epidemology. 2010;63:737–45.CrossRef
26.
Terwee C, Prinsen C, Chiarotto A, Westerman M, Patrick D, Alonso J, et al. Cosmin methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Qual Life Res. 2018;27(5):1159–70.
27.
28.
Gelinas L, Weissman J, Fernandez Lynch H, Gupta A, Rozenblum R, Largent E, et al. Oversight of patient-centred outcomes research: recommendations from a Delphi panel. Ann Intern Med. 2018;169(8):559–63.
29.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):83.CrossRef
30.
Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess R, editors. Analysing qualitative data. London: Routledge; 2007.
31.
Kall M, Auzenbergs M, Kelly C, Delpech V. Positive voices: the national survey of people with HIV. Findings from the 2017 survey. London: Public Health England; 2019.
32.
Willis G. Cognitive interviewing: a tool for improving questionnaire design. Thousand Oaks: Sage Publications; 2005.CrossRef
33.
Selman L, Speck P, Gysels M, Agupio G, Dinat N, Downing J, et al. 'Peace' and 'life worthwhile' as measures of spiritual well-being in African palliative care: a mixed-methods study. Health Qual Life Outcomes. 2013;11:94.PubMedPubMedCentralCrossRef
Metadata
Title
The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV
Authors
K. Bristowe
F. E. M. Murtagh
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
Publication date
01-12-2020
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2020
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-020-01462-5

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