1. Adopt an integrated, outcomes-focused, and patient-centred approach to long-term HIV care
People living with HIV require access to a range of health services beyond just their HIV treatment. This includes services for: prevention, treatment and management of comorbidities; mental health and neurocognitive impairment; and advice and support in relation to sexual and reproductive health. Such multidisciplinary, multispecialist care requires systematic coordination and a personalised approach – not only to ensure that all relevant services are provided, but also streamline service provision, ensure patient-safety (for example, in relation to polypharmacy and drug-drug interactions), and to enable effective communication between the different care providers involved.
A designated healthcare professional responsible for care coordination should be assigned to each person diagnosed with HIV. The care coordinator should develop, in partnership with the patient, a personalised care plan that addresses individual circumstances in relation to clearly defined health outcomes. The care plan should be regularly reviewed and updated, and implemented with the support of communication tools and protocols.
Elements of an integrated and patient-centred approach to long-term care of people living with HIV
The additional recommendations below supplement and provide further detail:
a. Put comorbidity prevention, treatment and management at the centre of long-term HIV care
People living with HIV are more likely than the general population to develop serious comorbidities and to develop them at an earlier age. These include: cardiovascular diseases, cancers, bone loss, respiratory, renal and liver diseases, mental health conditions, and coinfections such as tuberculosis, hepatitis and sexually-transmitted infections (STIs).
If these conditions are not properly treated and managed in a timely manner they can greatly complicate HIV care, have a negative impact on health and health-related quality of life for PLHIV, and significantly burden health systems. Prevention, diagnosis, treatment and ongoing management of comorbidities should therefore be core components of long-term care for all PLHIV – including through public health interventions (encouraging beneficial steps such as a healthy diet and exercise), and routine screening.
b. Coordinate outcomes-focused care delivery using a personalised care plan
The multi-disciplinary nature of long-term HIV care requires a coordinated response in all European countries. For each person diagnosed with HIV, there should be a designated healthcare professional responsible for coordinating that person’s care and ensuring efficient communication between the different disciplines and specialists involved. A key tool for care coordination in this context is the development of a personalised care plan. The care plan should be developed in partnership with the patient, and be regularly reviewed and updated in light of that person’s changing needs. The adoption of tools and protocols for communication and information sharing across disciplines is vital. Implementation barriers relating to insufficient knowledge and/or skills concerning the specific needs of key populations must also be addressed.
c. Integrate services for mental health and neurocognitive impairment
Mental illnesses, such as depression, and neurocognitive impairment are prominent among PLHIV. These conditions impact upon individuals’ energy levels, mood, and ability to perform daily life activities and engage in social relationships. They can add significantly to the burden of living with HIV and severely compromise health-related quality of life.
Mental health conditions and neurocognitive impairment can also make self-management of HIV more difficult and undermine adherence to essential ART drugs and HIV care. Long-term care for PLHIV should therefore integrate services to assess and manage any mental health and neurocognitive issues, including access to psychosocial support and other relevant specialists.
d. Ensure an ongoing focus on sexual and reproductive health
Fulfilling sexual and reproductive health, underpinned by knowledge of how to maintain protective behaviours, is a key aspect of the health and quality of life of PLHIV. Access to accurate information and advice on HIV transmission and methods of contraception should be complemented with services relating to conception, childbirth, and parenting options available for all.
PLHIV should have access to regular sexual health assessments as part of an integrated, outcomes-focused care plan that includes counselling and support services that are sensitive to the particular needs of individuals in different population groups. Action to address stigma and fear related to the sexuality of PLHIV is also crucial. Biomedical interventions available today can play a key role in this respect.
e. Increase systematic participation of PLHIV in decisions about their care
PLHIV should have the opportunity to become involved in decisions about their care. Decision aids explaining the advantages and disadvantages of different treatment options can empower PLHIV to discuss these options with care providers, and make informed choices in the light of personal circumstances. Building upon existing initiatives in this area, the development of such tools should harness the expertise of HIV community organisations.