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

doi:10.1080/09540121.2024.2334358

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

Vilcek Institute of Graduate Biomedical Sciences
London School of Hygiene & Tropical Medicine; University of the Witwatersrand
Health Psychology Section
INPUT Pain Management Unit
GUY'S & ST THOMAS' NHS FOUNDATION TRUST
British HIV Association
Departments of Psychology, University of Toronto, Toronto, ON M5T 2S8, Canada; Department of Psychiatry, University of Toronto, Toronto, ON M5T 2S8, Canada
Canadian HIV/AIDS and Chronic Pain Society
Brown University
Yale Schools of Medicine and Public Health
Univ London, Birkbeck University London, University College London, University of London Royal Veterinary College, University of London, St Georges University London, Imperial College London, Kings College London, Royal Holloway University London, Queen Mary University London, Div Populat Hlth Sci & Educ
1] Department of Genetics, Washington University School of Medicine, St. Louis, Missouri, USA. [2] Division of Biostatistics, Washington University School of Medicine, St. Louis, Missouri, USA. [3] Department of Psychiatry, Washington University School of Medicine, St. Louis, Missouri, USA.
King's College London, Faulty of Nursing, Midwifery and Palliative care, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, London, UK.
University of Cape Town
Montefiore Medical Center, UN Hospital Albert Einstein College of Medicine, Bronx, NY, USA.
School of Social Work; University of Pittsburgh; Pittsburgh Pennsylvania

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Abstract

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 language	English
Pages (from-to)	1291-1301
Number of pages	11
Journal	AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
Volume	36
Issue number	9
Early online date	8 Apr 2024
DOIs	https://doi.org/10.1080/09540121.2024.2334358
Publication status	Published - 2024

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Robinson-Papp, J., Lawrence, S., Wadley, A., Scott, W., George, M. C., Josh, J., O'Brien, K. K., Price, C., Uebelacker, L., Edelman, E. J., Evangeli, M., Goodin, B. R., Harding, R., Nkhoma, K., Parker, R., Sabin, C., Slawek, D., Tsui, J. I., & Merlin, J. S. (2024). Priorities for HIV and chronic pain research results from a survey of individuals with lived experience. AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV, 36(9), 1291-1301. https://doi.org/10.1080/09540121.2024.2334358

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abstract = "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.",

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Robinson-Papp, J, Lawrence, S, Wadley, A, Scott, W, George, MC, Josh, J, O'Brien, KK, Price, C, Uebelacker, L, Edelman, EJ, Evangeli, M, Goodin, BR, Harding, R , Nkhoma, K, Parker, R, Sabin, C, Slawek, D, Tsui, JI & Merlin, JS 2024, 'Priorities for HIV and chronic pain research results from a survey of individuals with lived experience', AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV, vol. 36, no. 9, pp. 1291-1301. https://doi.org/10.1080/09540121.2024.2334358

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AU - Robinson-Papp, Jessica

AU - Lawrence, Steven

AU - Wadley, Antonia

AU - Scott, Whitney

AU - George, Mary Catherine

AU - Josh, Jo

AU - O'Brien, Kelly K

AU - Price, Collen

AU - Uebelacker, Lisa

AU - Edelman, E Jennifer

AU - Evangeli, Michael

AU - Goodin, Burel R

AU - Harding, Richard

AU - Nkhoma, Kennedy

AU - Parker, Romy

AU - Sabin, Caroline

AU - Slawek, Deepika

AU - Tsui, Judith I

AU - Merlin, Jessica S

PY - 2024

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N2 - 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.

AB - 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.

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DO - 10.1080/09540121.2024.2334358

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SN - 0954-0121

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JO - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV

JF - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV

IS - 9

ER -

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

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