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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

Bristowe, K; Clift, P; James, R; Josh, J; Platt, M; Whetham, J; Nixon, E; Post, FA; McQuillan, K; Ní Cheallaigh, C; Murtagh, FEM; Anderson, J; Sullivan, AK; Harding, R

Authors

K Bristowe

C Ní Cheallaigh

J Anderson

AK Sullivan

R Harding

P Clift

R James

J Josh

M Platt

J Whetham

E Nixon

FA Post

K McQuillan

Abstract

Objectives
People living with HIV (PLWH) have multidimensional concerns requiring person‐centred care. Routine use of patient‐reported outcome measures (PROMs) improves outcomes. No brief PROM currently reflects the breadth of concerns for PLWH. This study sought to identify priority outcomes for PLWH, model current practice, explore views on introducing PROMs into routine care, and devise a model for person‐centred care incorporating the PROM.

Methods
A cross‐national multi‐centre study (London, Brighton and Dublin) was carried out. Semi‐structured qualitative interviews with adult PLWH, HIV health care professionals and HIV commissioners (responsible for planning and commissioning services) were performed. Interviews were analysed using thematic and framework analysis.

Results
PLWH (n = 28), professionals (n = 21) and commissioners (n = 8) described concerns related to living with HIV across six domains: physical (e.g. pain and gastrointestinal symptoms), cognitive (e.g. memory and sleep), psychological (e.g. anxiety and depression), social (e.g. isolation and intimacy), welfare (e.g. finances and fears regarding change of immigration status), and information (e.g. long‐term outcomes) needs. Themes were highly inter‐related, impacting across domains of need (e.g. physical and cognitive problems impacting on psychological and social wellbeing). Perceived benefits of using PROMs in routine HIV care included improved person‐centredness, patient empowerment, fewer missed concerns, increased engagement with services, and informed planning of services. Potential challenges included heterogeneity of PLWH, literacy, and utility for those who struggle to engage with care.

Conclusions
This study presents a novel model of person‐centred care incorporating an HIV‐specific PROM. The model reflects priorities of key stakeholders. Explicit use of PROMs in routine HIV care could afford benefits for PLWH, clinical teams and commissioners.

Journal Article Type Article
Publication Date Jun 4, 2019
Journal HIV Medicine
Print ISSN 1464-2662
Electronic ISSN 1468-1293
Publisher Wiley
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1111/hiv.12758
Keywords Health Policy; Pharmacology (medical); Infectious Diseases
Publisher URL https://onlinelibrary.wiley.com/doi/full/10.1111/hiv.12758