Priorities for HIV and chronic pain research results from a survey of individuals with lived experience

Jessica Robinson-Papp, Steven Lawrence, Antonia Wadley, Whitney Scott, Mary Catherine George, Jo Josh, Kelly K O'Brien, Collen Price, Lisa Uebelacker, E Jennifer Edelman, Michael Evangeli, Burel R Goodin, Richard Harding, Kennedy Nkhoma, Romy Parker, Caroline Sabin, Deepika Slawek, Judith I Tsui, Jessica S Merlin

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The Global Task Force on Chronic Pain in HIV published seven research priorities in the field of HIV-associated chronic pain in 2019: (1) causes; (2) management; (3) treatment individualization and integration with addiction treatment; (4) mental and social health factors; (5) prevalence; (6) treatment cost effectiveness; and (7) prevention. The current study used a web-based survey to determine whether the research topics were aligned with the priorities of adults with lived experiences of HIV and chronic pain. We also collected information about respondents' own pain and treatment experiences. We received 311 survey responses from mostly US-based respondents. Most respondents reported longstanding, moderate to severe, multisite pain, commonly accompanied by symptoms of anxiety and/or depression. The median number of pain treatments tried was 10 (IQR = 8, 13), with medications and exercise being the most common modalities, and opioids being viewed as the most helpful. Over 80% of respondents considered all research topics either "extremely important" or "very important". Research topic #2, which focused on optimizing management of pain in people with HIV, was accorded the greatest importance by respondents. These findings suggest good alignment between the priorities of researchers and US-based people with lived experience of HIV-associated chronic pain.

Original languageEnglish
Pages (from-to)1-11
Number of pages11
JournalAIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
Early online date8 Apr 2024
Publication statusE-pub ahead of print - 8 Apr 2024


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