Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study
BackgroundDue 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 socioeconomic issues. Positive Voices is a nat...
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JMIR Publications
2025-01-01
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| author | Janey Sewell Carole Kelly Adamma Aghaizu Hannah Kitt Annegret Pelchen-Matthews Veronique Martin Amal Farah Colette Smith Alison Brown Clare Humphreys Alex Sparrowhawk Valerie Delpech Alison Rodger Fiona Lampe Meaghan Kall |
| author_facet | Janey Sewell Carole Kelly Adamma Aghaizu Hannah Kitt Annegret Pelchen-Matthews Veronique Martin Amal Farah Colette Smith Alison Brown Clare Humphreys Alex Sparrowhawk Valerie Delpech Alison Rodger Fiona Lampe Meaghan Kall |
| author_sort | Janey Sewell |
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BackgroundDue 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 socioeconomic issues. Positive Voices is a nationally representative series of surveys of people with HIV in the United Kingdom. It monitors the physical, mental, and social health, well-being, and needs of this population so that they can be addressed.
ObjectiveThis paper aimed to describe the methodology, recruitment strategies, and key sociodemographic features of participants recruited for the second national round of Positive Voices (PV2022).
MethodsPV2022 was a national, cross-sectional questionnaire study that included people attending HIV care at 101 of the 178 clinics in the United Kingdom between April 2022 and March 2023. Data from the HIV and AIDS reporting system (HARS), a national surveillance database of people with HIV and attending care that is held at the UK Health Security Agency (UKHSA), was used as a sampling frame. The information collected in PV2022 included demographic and socioeconomic factors, HIV diagnoses 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. Data linkage to HARS enabled the extraction of clinical information on antiretroviral therapy (ART), HIV viral load, and CD4 lymphocyte counts. Probabilistic sampling was used to provide a randomly selected, representative sample of people attending HIV care who could be invited to complete a paper or online questionnaire 'on the web' to online. At the start of 2023, the study was underrecruiting, mainly due to the mpox outbreak, and a separate sequential recruitment strategy was initiated in 14 of the largest and most demographically diverse clinics to increase participant numbers.
ResultsOf the 4622 participants who completed the questionnaire, 3692 were recruited through probabilistic recruitment and 930 through sequential recruitment. The overall response rate (measured as the number of people who completed a questionnaire of those who either accepted or declined) was 50%. Survey respondents represented approximately 1 in 20 people diagnosed with HIV in England, Wales, and Scotland. The median age of participants was 52 years, 3428 of participants were male, 2991 were of White ethnicity, and 1121 were of Black ethnicity.
ConclusionsPV2022 is currently the largest survey of people with HIV in the United Kingdom (as of September 2024). The PV2022 findings will be used to explore the health and well-being of the HIV population and examine associations with demographic, socioeconomic, lifestyle, and other HIV-related factors.
International Registered Report Identifier (IRRID)RR1-10.2196/58531 |
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| spelling | doaj-art-00a37af08f9843a4aa08a90c3f0d8c1f2025-01-10T21:00:33ZengJMIR PublicationsJMIR Research Protocols1929-07482025-01-0114e5853110.2196/58531Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire StudyJaney Sewellhttps://orcid.org/0000-0001-7148-2391Carole Kellyhttps://orcid.org/0000-0001-8934-224XAdamma Aghaizuhttps://orcid.org/0000-0003-2857-9168Hannah Kitthttps://orcid.org/0009-0000-3983-1360Annegret Pelchen-Matthewshttps://orcid.org/0000-0002-0994-5655Veronique Martinhttps://orcid.org/0000-0002-0570-095XAmal Farahhttps://orcid.org/0009-0008-4811-3967Colette Smithhttps://orcid.org/0000-0003-2847-3355Alison Brownhttps://orcid.org/0000-0002-6490-6739Clare Humphreyshttps://orcid.org/0009-0008-5730-719XAlex Sparrowhawkhttps://orcid.org/0009-0002-8580-9986Valerie Delpechhttps://orcid.org/0000-0002-9952-8109Alison Rodgerhttps://orcid.org/0000-0001-8817-4651Fiona Lampehttps://orcid.org/0000-0001-6851-5471Meaghan Kallhttps://orcid.org/0000-0001-6971-427X BackgroundDue 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 socioeconomic issues. Positive Voices is a nationally representative series of surveys of people with HIV in the United Kingdom. It monitors the physical, mental, and social health, well-being, and needs of this population so that they can be addressed. ObjectiveThis paper aimed to describe the methodology, recruitment strategies, and key sociodemographic features of participants recruited for the second national round of Positive Voices (PV2022). MethodsPV2022 was a national, cross-sectional questionnaire study that included people attending HIV care at 101 of the 178 clinics in the United Kingdom between April 2022 and March 2023. Data from the HIV and AIDS reporting system (HARS), a national surveillance database of people with HIV and attending care that is held at the UK Health Security Agency (UKHSA), was used as a sampling frame. The information collected in PV2022 included demographic and socioeconomic factors, HIV diagnoses 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. Data linkage to HARS enabled the extraction of clinical information on antiretroviral therapy (ART), HIV viral load, and CD4 lymphocyte counts. Probabilistic sampling was used to provide a randomly selected, representative sample of people attending HIV care who could be invited to complete a paper or online questionnaire 'on the web' to online. At the start of 2023, the study was underrecruiting, mainly due to the mpox outbreak, and a separate sequential recruitment strategy was initiated in 14 of the largest and most demographically diverse clinics to increase participant numbers. ResultsOf the 4622 participants who completed the questionnaire, 3692 were recruited through probabilistic recruitment and 930 through sequential recruitment. The overall response rate (measured as the number of people who completed a questionnaire of those who either accepted or declined) was 50%. Survey respondents represented approximately 1 in 20 people diagnosed with HIV in England, Wales, and Scotland. The median age of participants was 52 years, 3428 of participants were male, 2991 were of White ethnicity, and 1121 were of Black ethnicity. ConclusionsPV2022 is currently the largest survey of people with HIV in the United Kingdom (as of September 2024). The PV2022 findings will be used to explore the health and well-being of the HIV population and examine associations with demographic, socioeconomic, lifestyle, and other HIV-related factors. International Registered Report Identifier (IRRID)RR1-10.2196/58531https://www.researchprotocols.org/2025/1/e58531 |
| spellingShingle | Janey Sewell Carole Kelly Adamma Aghaizu Hannah Kitt Annegret Pelchen-Matthews Veronique Martin Amal Farah Colette Smith Alison Brown Clare Humphreys Alex Sparrowhawk Valerie Delpech Alison Rodger Fiona Lampe Meaghan Kall Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study JMIR Research Protocols |
| title | Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study |
| title_full | Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study |
| title_fullStr | Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study |
| title_full_unstemmed | Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study |
| title_short | Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study |
| title_sort | methodology for the positive voices 2022 survey of people with hiv accessing care in england wales and scotland cross sectional questionnaire study |
| url | https://www.researchprotocols.org/2025/1/e58531 |
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