eprintid: 10191100 rev_number: 9 eprint_status: archive userid: 699 dir: disk0/10/19/11/00 datestamp: 2024-04-23 12:11:28 lastmod: 2024-04-23 12:11:28 status_changed: 2024-04-23 12:11:28 type: article metadata_visibility: show sword_depositor: 699 creators_name: Robinson-Papp, Jessica creators_name: Lawrence, Steven creators_name: Wadley, Antonia creators_name: Scott, Whitney creators_name: George, Mary Catherine creators_name: Josh, Jo creators_name: O'Brien, Kelly K creators_name: Price, Collen creators_name: Uebelacker, Lisa creators_name: Edelman, E Jennifer creators_name: Evangeli, Michael creators_name: Goodin, Burel R creators_name: Harding, Richard creators_name: Nkhoma, Kennedy creators_name: Parker, Romy creators_name: Sabin, Caroline creators_name: Slawek, Deepika creators_name: Tsui, Judith I creators_name: Merlin, Jessica S title: Priorities for HIV and chronic pain research: results from a survey of individuals with lived experience ispublished: inpress divisions: UCL divisions: B02 divisions: D01 divisions: G16 keywords: Chronic pain, HIV, pain treatment, patient engagement, research priorities, SDG 3: Good health and well-being note: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. 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. date: 2024-04-08 date_type: published publisher: Informa UK Limited official_url: https://doi.org/10.1080/09540121.2024.2334358 full_text_type: other language: eng verified: verified_manual elements_id: 2266889 doi: 10.1080/09540121.2024.2334358 medium: Print-Electronic lyricists_name: Sabin, Caroline lyricists_id: CASAB15 actors_name: Sabin, Caroline actors_id: CASAB15 actors_role: owner full_text_status: restricted publication: AIDS Care event_location: England issn: 0954-0121 citation: Robinson-Papp, Jessica; Lawrence, Steven; Wadley, Antonia; Scott, Whitney; George, Mary Catherine; Josh, Jo; O'Brien, Kelly K; ... Merlin, Jessica S; + view all <#> Robinson-Papp, Jessica; Lawrence, Steven; Wadley, Antonia; Scott, Whitney; George, Mary Catherine; Josh, Jo; O'Brien, Kelly K; Price, Collen; Uebelacker, Lisa; Edelman, E Jennifer; Evangeli, Michael; Goodin, Burel R; Harding, Richard; Nkhoma, Kennedy; Parker, Romy; Sabin, Caroline; Slawek, Deepika; Tsui, Judith I; Merlin, Jessica S; - view fewer <#> (2024) Priorities for HIV and chronic pain research: results from a survey of individuals with lived experience. AIDS Care 10.1080/09540121.2024.2334358 <https://doi.org/10.1080/09540121.2024.2334358>. (In press). document_url: https://discovery.ucl.ac.uk/id/eprint/10191100/2/Sabin_Pain%20survey%20manuscript%2010.4.23.pdf