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Theme C: Project 2: The Pathways Project A qualitative longitudinal study of HIV treatment and care

The 'Cascade of Care' represents population-level access to and engagement in HIV testing, care and treatment, showing the percentage of people estimated to be living with HIV who are diagnosed, linked to HIV services, retained in care, receiving anti-retroviral treatment (ART), and have an undetectable viral load (Gardner et al., 2011, Mugavero et al., 2013).

This model is potentially very useful in informing public health responses to HIV prevention and care (Hull et al., 2012). However, we currently know little about the social and systemic factors that affect the care cascade in the UK, how these factors may change over time, and how well the ‘Cascade of Care’ model actually reflects individual HIV care and treatment experiences (Hsieh et al., 2014).

To help answer some of these questions, we are carrying out a qualitative longitudinal study about HIV care and treatment across the stages of the care cascade, from the perspectives of people living with HIV. Over a two year period, we aim to interview a range of people living with HIV in London, up to three times, to find out about their experiences of HIV care and treatment from the point of their diagnosis, about the contextual factors that have affected their experiences, and how these have changed over time.

A study advisory group of HIV community and patient representatives, clinicians, other service providers and researchers will advise us on how best to design, implement and disseminate the findings of the study to inform advocacy, policy and practice.

Together with the other projects in this theme, we will use the results of this study to make recommendations for social and structural interventions to improve care and treatment for people living with HIV in the UK. We will also use our findings to inform surveillance and modelling of the UK care cascade, including work being undertaken within this theme. Similarly, our research will be informed by work being undertaken at Public Health England to estimate the Cascade of Care for groups of people living with HIV in the UK.

Project news and updates

Before beginning interviews, we are carrying out a series of informal consultations with a wide range of HIV community and patient representatives, clinicians, other service providers and researchers, to inform our research questions, methods and interview guides.


GARDNER, E. M., MCLEES, M. P., STEINER, J. F., DEL RIO, C. & BURMAN, W. J. 2011. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis, 52, 793-800.

HSIEH, A., RODRIGUES, J., SKOVDAL, M., MELILLO, S. & WALKER, D. 2014. From patient to person: the need for an 'HIV trajectories' perspective in the delivery of prevention of mother-to-child-transmission services. AIDS, 28 Suppl 3, S399-409.

HULL, M. W., WU, Z. & MONTANER, J. S. 2012. Optimizing the engagement of care cascade: a critical step to maximize the impact of HIV treatment as prevention. Curr Opin HIV AIDS, 7, 579-86. 

MUGAVERO, M. J., AMICO, K. R., HORN, T. & THOMPSON, M. A. 2013. The state of engagement in HIV care in the United States: from cascade to continuum to control. Clin Infect Dis, 57, 1164-71.

Lead researchers