Introduction Figures for the UK’s HIV treatment cascade are among the best worldwide with over 95% retention once in care, however guidelines and service models are changing. We examine perspectives on each stage of the cascade among four generations of patients.
Methods In-depth interviews with 48 HIV-positive adults from two clinics. Participants were purposively selected from the four ‘HIV generations’, based on ART development – those diagnosed pre-1996, 1997–2005, 2006–2012, and since 2013. Framework was used to analyse the data.
Results Diagnosis - Participants from the pre-treatment era were diagnosed on the development of AIDS-defining symptoms, or following a partner’s diagnosis. Late diagnoses more recently were because patients underestimated their own risk or failures of healthcare professionals to spot indicator conditions.
Linkage with care - Earlier generations sometimes disengaged with care for a period following diagnosis, dismayed by limited treatment options. In contrast, those diagnosed since 2005 linked to care promptly and felt they received appropriate medical attention.
Retention in care - Across the generations, once linked to care participants were committed to attending appointments and taking medications. Occasional lapses were explained by external issues such as drug misuse or household disruption, rather than their relationship with the clinic. Some reported concern at the recently reduced frequency of appointments, and the increasing role of primary care.
Viral suppression among those on ART - Most participants on ART had undetectable viral load and good adherence. Actual or anticipated co-morbidities worried them more than HIV, however, wider discussions about NHS cost-cutting have raised patient anxiety about accessing the ‘best’ treatments.
Conclusion The high standard of UK’s HIV treatment cascade reflects strong relationships between patients and staff, which service changes could undermine. Being sensitive to how patients experience different stages of decision-making and the wider influences on their behaviour is vital towards sustaining high retention along the cascade.
Disclosure of interest statement This study is funded by a grant from the Imperial NIHR BRC and the Imperial Healthcare Charity. No pharmaceutical grants were received in the development of this study.
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