The HIV care continuum describes HIV care as a progression from testing to HIV diagnosis and linkage into care, retention in care, adherence to ART, and, ultimately, suppression of the virus. In practice, an individual does not simply move sequentially through each stage of this continuum. Engagement in care is dynamic and disengagement from care may happen at any time. The prognosis for people living with HIV who engage fully with specialist HIV care with high-quality, tailored multidisciplinary management continues to improve, with ongoing reduction in morbidity and mortality.
HIV remains a stigmatised and socially complex diagnosis that disproportionately affects already marginalised population groups. People living with HIV should be able to access appropriate specialist HIV care without fear of discrimination. Specialist HIV services should be provided in a non-judgemental environment in which people living with HIV feel secure and where their confidentiality and autonomy is actively respected. People living with HIV who are less well engaged in care have a significantly increased risk of mortality.
Systematic monitoring of engagement in care and mechanisms to identify and follow up those that do not attend (DNAs) is imperative for a high-quality HIV service. There is currently no gold standard for measuring engagement in care. The approach taken by the NHS England HIV quality dashboard includes indicators for the proportion of patients who re-attend during the 12–24 months after HIV diagnosis and after being seen for care. It is valuable to review these as a measure of performance, but individual patient management procedures are needed to recognise and respond to signs of disengagement before the 24-month indicator cut-off is reached.
People may become disengaged from specialist HIV care at various points along the care continuum for a variety of reasons. It is important to recognise these reasons may relate to individual, community and/or structural issues. Services should be designed and delivered in ways that maximise the opportunities for people living with HIV to consistently attend and remain engaged in care. At the time of re-engagement, it is essential to try and understand the reasons that led to the individual’s disengagement, and where possible to address these with tailored interventions. This might mean, for example, increasing the offer of evening appointments.
Recent data highlight factors that may be predictive of suboptimal engagement in care in newly diagnosed people. These include 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. People with mental health comorbidities and people who use drugs may also be at particular risk (see Standard 4c). Close working links between primary care, secondary care, mental health services, social care, legal services, benefit agencies, peer support and voluntary sector agencies is required in these situations to maximise wellbeing.
People living with HIV may relocate, be detained or incarcerated, or choose to engage with a new HIV service. Mechanisms should be in place for seamless transfer of care, both from the sending and receiving clinical services, with appropriate transfer of information between teams.
Increasing numbers of children living with HIV in the UK are entering adolescence. The process of adolescents successfully making the transition to adult HIV services is complex and should be managed by a multidisciplinary team in accordance with CHIVA guidance.