Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014

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Title: Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014
Authors: Bruton, PJ
Rai, T
Day, S
Ward, H
Item Type: Journal Article
Abstract: Objectives: To describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment, from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example whether they had experienced HIV care in the pre-treatment era. Design: Qualitative interview study with framework analysis Setting: Two large HIV adult outpatient clinics in central London. Participants: 52 HIV positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four ‘generations’: pre-1996 (pre-ART), 1997 to 2005 (complex ARTs), 2006 to 2012 (simpler ARTs), 2013 onwards (recent diagnoses). Results: Some important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side-effects from early antiretroviral therapy (ART). However, despite improvements in ART and life expectancy over the epidemic we found a striking similarity across participants’ accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone, fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis, engaging with care was facilitated by a flexible approach from services/clinicians and initiating treatment was a major life decision. Conclusion: We found patients’ experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment services should continue to recognise the needs of patients for whom the diagnosis and treatment remain significant challenges.
Issue Date: 30-Mar-2018
Date of Acceptance: 6-Mar-2018
ISSN: 2044-6055
Publisher: BMJ Journals
Journal / Book Title: BMJ Open
Volume: 8
Issue: 3
Copyright Statement: © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See:
Sponsor/Funder: Imperial College Healthcare Charity
Imperial College Healthcare NHS Trust- BRC Funding
Imperial College Healthcare NHS Trust- BRC Funding
Funder's Grant Number: 7006/P31U
RDC02 79560
Keywords: Science & Technology
Life Sciences & Biomedicine
Medicine, General & Internal
General & Internal Medicine
hiv care continuum
patient experience
qualitative research
Publication Status: Published
Article Number: e020208
Online Publication Date: 2018-03-30
Appears in Collections:Faculty of Medicine
Epidemiology, Public Health and Primary Care

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