Introducing HIV Outcomes UK
Patient representatives, clinicians, researchers, civil society and industry were brought together under the leadership of HIV Outcomes Co-Chair Prof. Jane Anderson to discuss the health-related quality of life (HRQoL) of people living with HIV in the UK (report of one of the roundtable discussions).
UK stakeholders recognised the importance of people’s HRQoL to the future of HIV care but highlighted challenges around measuring HRQoL as there is still no consensus on what ‘good’ HRQoL is. Attendees agreed to develop a narrative to shape the HIV Action Plan in the UK and the following recommendations were put forward:
- Optimising HRQoL of people living with HIV at all stages of life, should be a principal aim of the HIV Action Plan, with clear milestones for its achievement.
- The HIV Action Plan should capture a commitment to monitor, assess and benchmark HRQoL, using a measurement that is co-produced and agreed with the HIV community. This should be as a prelude to work towards agreeing on a method to systematically measure HRQoL of people living with HIV to track progress and highlight success. This work should aim to help ensure that people living with HIV have a level of HRQoL that is at last equal to that of people with other long-term chronic conditions/the wider public.
- The importance of multi-disciplinary teams (MDT) to deliver the holistic support that is required can improve quality of life for people living with HIV – the role of the MDT should be highlighted and encouraged.
- The assessment and mitigation of stigma and discrimination in all areas of society, including in education and in non-HIV specialised healthcare settings, should be a policy priority within the HIV Action Plan.
