The management of HIV in the era of multiple, highly effective, generally safe and well-tolerated treatment choices can seem quite straightforward. There are, however, a number of factors that can act as barriers to successful engagement in care, adherence to treatment and enjoyment of a good quality of life. People living with HIV experience high levels of stigma and discrimination because of their diagnosis but the people affected by HIV are also more likely to be members of communities that are already subject to discrimination and social disadvantage.
People living with HIV are more likely than the general population to have multiple long-term conditions, to have poorer mental health, poorer sexual health and to have problems with alcohol and substance use. These issues can lead to an individual having a collection of diagnoses that might be seen as a marker of complexity or increased need. This approach does not account for individual variation in the ability to manage these problems and the impact on health overall. The person’s individual resources, ability to cope, social connection and support, and the wider socio-cultural context are likely to play a major role in determining the effect of a given health problem.
There is no single, validated framework or tool to identify people for whom adhering to HIV treatment and engaging in care requires significant levels of support. While there is considerable awareness of complexity in HIV medicine, at the time of writing there is no validated means for identifying people that might allow ‘risk stratification’. Some work has been done in identifying those more at risk of suboptimal engagement in care. NICE has also produced guidance (NG56) that makes recommendations on tailoring care for people with multimorbidity, particularly if any of the following apply:
They find it difficult to manage their treatments or day-to-day activities;
They receive care and support from multiple services and need additional services;
They have both long-term physical and mental health conditions;
They have frailty or falls;
They frequently seek unplanned or emergency care; or
They are prescribed multiple regular medications.
However, there is a paucity of evidence on effective interventions to tackle engagement issues. We recommend that a biopsychosocial approach is used to underpin person-centred care for all people living with HIV. The objective of this approach would be to identify and address factors that are likely to create additional need or vulnerability. It is recognised that some factors, such as poverty, are difficult for service providers to influence. Nevertheless, the formulation with the person concerned of what might be called a ‘personalised care plan’ or an ‘individualised management plan’ would allow identification of need, understanding of priorities for that individual and targeting of resources. Ideally such an approach would be shared with all the agencies and services involved with the person, with one agency responsible for the coordination of care. This whole-person approach to care will require contribution from a number of different agencies and providers across the health and social care spectrum and the third sector, as illustrated in these Standards.
People with several long-term conditions, who face economic hardship and/or who have alcohol or substance use problems are more likely to have mental health difficulties that may be more complex. The standards for psychological care are likely to be of particular importance.
People with multiple needs will often have a number of agencies or services involved in their care, but they may also be the least able to make best use of these services and face challenges in attending the multiple appointments that are often required. A care coordinator role has been successfully used in other conditions such as mental health and is widely advocated for people with complex needs.
Increased need may often come from social disadvantage and responding to issues such as homelessness, immigration issues, intimate partner and gender-based violence, stigma and social exclusion will assist in optimising life outcomes for people living with HIV.
Globally, it is estimated that one in four women experiences violence from an intimate partner (IPV) in her lifetime, making this the commonest form of violence against women. Women living with HIV report higher rates than those in the general population, and IPV appears more likely at the time of HIV disclosure and pregnancy. Screening questionnaires such as the HARK tool (Humiliated, Afraid, Rape, Kick) have been shown to be easy to use and acceptable to women.
There is very little known about the relationship between IPV and HIV in men. However, one study that used a representative sample estimated that 26.9% of gay men had experienced IPV in their lifetimes and 12.1% had experienced IPV in the past year. Studies suggest that transgender people may confront similar, if not higher, levels of IPV as compared to sexual minority men and women and cisgender people. Findings of lifetime IPV among transgender people from purposive studies range from 31.1% to 50.0%.
Services should have robust referral pathways and support for women and men reporting IPV or the risk of this.
People who use drugs represent a group that may be particularly affected by HIV and while the prevalence in this group has remained relatively low in the UK overall, outbreaks can occur. People who use drugs meet many of the NICE criteria outlined above as well as facing numerous challenges in the social and policy climate that could result in poor clinical outcomes. Clinical services and public health organisations should work together to identify and tackle the particular challenges facing this population.