Background:

Antiretroviral therapy (ART) benefits individuals living with human immunodeficiency virus (HIV) through reduced morbidity and mortality, and brings public health gains through a reduction in HIV transmission. People living with human immunodeficiency virus (PLWH) need to know their HIV status and engage in HIV care in order for these individual and public health benefits to be realised.

Objective:

To explore, describe and understand HIV outpatient attendance in PLWH, in order to develop cost-effective interventions to optimise engagement in care.

Design:

A mixed-methods study incorporating secondary analysis of data from the UK Collaborative HIV Cohort (UK CHIC) study and primary data collection.

Methods:

Phase 1 – an engagement-in-care (EIC) algorithm was developed to categorise patients as in care or out of care for each month of follow-up. The algorithm was used in group-based trajectory analysis to examine patterns of attendance over time and of the association between the proportion of months in care before ART initiation and post-ART mortality and laboratory test costs. Phase 2 – a cross-sectional survey was conducted among patients attending seven London HIV clinics. Regular attenders (all appointments attended in past year), irregular attenders (one or more appointments missed in past year) and non-attenders (recent absence of ≥ 1 year) were recruited. A ‘retention risk tool’ was developed to identify those at risk of disengaging from care. Individual in-depth interviews and focus groups were conducted with PLWH. Phase 3 – key informant interviews were conducted with HIV service providers. Interventions were developed from the findings of phases 2 and 3.

Results:

Plots from group-based trajectory analysis indicated that four trajectories best fitted the data. Higher EIC is associated with reduced mortality but the association between EIC before starting ART, and post-ART mortality [relative hazard (RH) per 10% increase in EIC 0.29, 95% confidence interval (CI) 0.18 to 0.47] was attenuated after adjustment for fixed covariates and post-ART cluster of differentiation 4 counts and viral loads (RH 0.74, 95% CI 0.42 to 1.30). Small differences were found in pre-ART EIC and the costs of post-ART lab tests. The final model for the retention risk tool included age at diagnosis, having children, recreational drug use, drug/alcohol dependency, insufficient money for basic needs and use of public transport to get to the clinic. Quantitative and qualitative data showed that a range of psychological, social and economic issues were associated with disengagement from care. The negative impact of stigma on attendance was highlighted. Interventions were proposed that support a holistic approach to care including peer support, address stigma by holding clinics in alternative locations and involve training staff to encourage attendance.

Conclusions:

The study shows the adverse health impacts of disengaging from HIV care and demonstrates the importance of the wider health and social context in managing HIV effectively. Although phase 1 analysis was based on UK data, phases 2 and 3 were limited to London. The interventions proposed are supported by the data but their cost-effectiveness requires testing. Future research is needed to evaluate the interventions, to validate our retention risk tool across populations and settings, and to fully analyse the economic costs of disengaging from HIV care.

Funding:

The National Institute for Health Research Health Services and Delivery Research programme. The UK CHIC study is funded by the Medical Research Council UK (grant numbers G0000199, G0600337, G0900274 and M004236).

Article history

The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 11/2004/50. The contractual start date was in March 2013. The final report began editorial review in May 2016 and was accepted for publication in December 2016. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

Fiona Burns reports personal fees and other from Gilead Sciences Ltd and personal fees from Janssen HIV, outside the submitted work. Caroline Sabin reports personal fees from Gilead Sciences Ltd, ViiV Healthcare, Janssen-Cilag and Bristol-Myers Squibb, outside the submitted work. Steve Morris is a member of the National Institute for Health Research (NIHR) Health Services and Delivery Research Programme Funding Board, which funded this research. He is also a member of the NIHR Public Health Research Funding Board and the NIHR Programme Grants for Applied Research expert subpanel.