Positive Voices 2022: Methodology and recruitment of a national survey of people with HIV and accessing care in England, Wales, and Scotland (Preprint)

Abstract

Due to advances in treatment, HIV is now a chronic condition with near-normal life expectancy. However, people with HIV continue to have a higher burden of mental and physical health conditions and are impacted by wider socio-economic issues. Positive Voices is a nationally representative series of surveys of people with HIV in the UK which investigate their health and wellbeing and assess needs and health inequalities. We describe the methodology, recruitment strategies and key sociodemographic features of participants recruited for the second national round of Positive Voices (PV2022).

The objectives of the survey are to examine: 1. How satisfied are people living with HIV with the current standard and model of HIV care? 2. What are the self-reported prevalences of associated chronic diseases (such as cardiovascular disease, metabolic conditions, mental/neurocognitive disorders) and their risk factors in PLHIV? 3. What are the current models/patterns of accessing care for HIV and associated chronic conditions? 4. How prevalent is HIV-related stigma and discrimination experienced by people with HIV? 5. What are the prevalence and key determinants of sexual and other health-related risk behaviours among people living with HIV in the UK? 6. How has the COVID pandemic impacted the health and well-being of people living with HIV?

PV2022 was a cross-sectional questionnaire study that included people attending HIV care at 101 UK clinics between April 2022 and March 2023. Data from the HIV and AIDS Reporting System (HARS), a national surveillance database of people with HIV attending care, held at the UK Health Security Agency (UKHSA), was used as a sampling frame. Information collected in PV2022 included: demographic and socioeconomic factors, HIV diagnosis and treatment, mental and physical health, health service use and satisfaction, social care and support, met and unmet needs, stigma and discrimination, quality of life, lifestyle factors and additional challenges experienced due to the COVID-19 pandemic. HARS linkage was used to extract clinic-recorded information on antiretroviral therapy (ART), HIV viral load (VL) and CD4 count. Initially, probabilistic sampling was used to provide a randomly selected representative sample of patients who were invited to participate by completion of a paper or online questionnaire. At the start of 2023, due to under-recruitment largely as a result of the impact of the COVID-19 pandemic and mpox outbreak, an alternative sequential recruitment strategy was initiated in 14 of the largest clinics to increase participant numbers.

In total, 4,618 participants completed the survey questionnaire, of these, 3690 participants were recruited through the initial recruitment and 928 through the sequential strategy. In total 4,540 participants could be linked to HARS. The overall response rate, calculated as number of people who completed a questionnaire out of all those who either accepted or declined to participate, was 50%. The survey responses represent approximately 1 in 20 people living with diagnosed HIV in England, Wales, and Scotland. Three-quarters of participants were male (74%), over half were of white ethnicity (65%), and nearly a quarter were of black African ethnicity (24%).

Currently, PV2022 is the largest survey of people with HIV in the UK. The findings from PV2022 will be used to investigate the health and wellbeing of people with HIV and associations with demographic, socioeconomic, lifestyle and HIV-related factors. Findings will inform the HIV Action Plan for England, interventions to improve patient-centred care, and the provision of HIV clinical and support services.