Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US
Introduction: Participation in early-phase HIV cure studies includes clinical risks with little to no likelihood of clinical benefit. Examining the willingness of people living with HIV to participate is important to guide study design and informed consent. Our study examined the overall willingness...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2017-01-01
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| Series: | Journal of Virus Eradication |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2055664020302958 |
| _version_ | 1818848757148549120 |
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| author | Karine Dubé David Evans Laurie Sylla Jeff Taylor Bryan J. Weiner Asheley Skinner Harsha Thirumurthy Joseph D. Tucker Stuart Rennie Sandra B. Greene |
| author_facet | Karine Dubé David Evans Laurie Sylla Jeff Taylor Bryan J. Weiner Asheley Skinner Harsha Thirumurthy Joseph D. Tucker Stuart Rennie Sandra B. Greene |
| author_sort | Karine Dubé |
| collection | DOAJ |
| description | Introduction: Participation in early-phase HIV cure studies includes clinical risks with little to no likelihood of clinical benefit. Examining the willingness of people living with HIV to participate is important to guide study design and informed consent. Our study examined the overall willingness of people living with HIV to participate in HIV cure research in the US, focusing on perceived risks and benefits of participation. Methods: We undertook an online survey of adults living with HIV in the US. Survey questions were developed based on previous research and a scoping review of the literature. We quantitatively assessed individuals’ perceived risks and benefits of HIV cure-related research and respondents’ willingness to participate in different modalities of HIV cure studies. Results: We recruited 409 study participants of whom 400 were eligible for the study and were included in the analysis (nine were not eligible due to self-declared HIV-negative status). We found >50% willingness to participate in 14 different types of HIV cure studies. Perceived clinical benefits and social benefits were important motivators, while personal clinical risks appeared to deter potential participation. Roughly two-thirds of survey respondents (68%) indicated that they were somewhat willing to stop treatment as part of HIV cure research. In the bivariate models, females, African Americans/blacks, Hispanics, individuals in the lowest income bracket, people living with HIV for longer periods of their lives, and people who were self-perceived ‘very healthy’ were less willing to participate in certain types of HIV cure studies than others. Multivariate results showed the perceived benefits (adjusted odds ratios >1) and perceived risks (adjusted odds ratios <1) acted as potential motivators and deterrents to participation, respectively. Conclusion: Our study is the first attempt to quantify potential motivators and deterrents of participation in HIV cure research in the US using perceived risks and benefits. The results offer guidance to HIV cure researchers and developers of interventions about the beneficial and detrimental characteristics of HIV cure strategies that are most meaningful to people living with HIV. The study also highlights new potential lines of inquiry for further social science and ethics research. |
| first_indexed | 2024-12-19T06:22:25Z |
| format | Article |
| id | doaj.art-8445bb6771654be0aa34f8624a10f548 |
| institution | Directory Open Access Journal |
| issn | 2055-6640 |
| language | English |
| last_indexed | 2024-12-19T06:22:25Z |
| publishDate | 2017-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Journal of Virus Eradication |
| spelling | doaj.art-8445bb6771654be0aa34f8624a10f5482022-12-21T20:32:39ZengElsevierJournal of Virus Eradication2055-66402017-01-01314071Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the USKarine Dubé0David Evans1Laurie Sylla2Jeff Taylor3Bryan J. Weiner4Asheley Skinner5Harsha Thirumurthy6Joseph D. Tucker7Stuart Rennie8Sandra B. Greene9University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA; Corresponding author: Karine Dubé, Public Health Leadership Program, UNC Gillings School of Global Public Health, McGavran Greenberg Hall, Campus Box 7469, Chapel Hill, NC, 27599-7469, USADelaney AIDS Research Enterprise (DARE) Community Advisory Board (CAB), Los Angeles, CA, USA; Project Inform, Los Angeles, CA, USAdefeatHIV CAB, Seattle, USACollaboratory of AIDS Researchers for Eradication (CARE) CAB, Palm Springs, USAUniversity of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA; Department of Global Health, University of Washington, Seattle, WA, USAUniversity of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA; Duke Clinical Research Institute (DCRI), Durham, NC, USAUniversity of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USAUNC Project China, Guangzhou, China; UNC Institute of Global Health and Infectious Diseases (IGHID), Chapel Hill, NC, USADepartment of Social Medicine, UNC Bioethics Center, Chapel Hill, NC, USAUniversity of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USAIntroduction: Participation in early-phase HIV cure studies includes clinical risks with little to no likelihood of clinical benefit. Examining the willingness of people living with HIV to participate is important to guide study design and informed consent. Our study examined the overall willingness of people living with HIV to participate in HIV cure research in the US, focusing on perceived risks and benefits of participation. Methods: We undertook an online survey of adults living with HIV in the US. Survey questions were developed based on previous research and a scoping review of the literature. We quantitatively assessed individuals’ perceived risks and benefits of HIV cure-related research and respondents’ willingness to participate in different modalities of HIV cure studies. Results: We recruited 409 study participants of whom 400 were eligible for the study and were included in the analysis (nine were not eligible due to self-declared HIV-negative status). We found >50% willingness to participate in 14 different types of HIV cure studies. Perceived clinical benefits and social benefits were important motivators, while personal clinical risks appeared to deter potential participation. Roughly two-thirds of survey respondents (68%) indicated that they were somewhat willing to stop treatment as part of HIV cure research. In the bivariate models, females, African Americans/blacks, Hispanics, individuals in the lowest income bracket, people living with HIV for longer periods of their lives, and people who were self-perceived ‘very healthy’ were less willing to participate in certain types of HIV cure studies than others. Multivariate results showed the perceived benefits (adjusted odds ratios >1) and perceived risks (adjusted odds ratios <1) acted as potential motivators and deterrents to participation, respectively. Conclusion: Our study is the first attempt to quantify potential motivators and deterrents of participation in HIV cure research in the US using perceived risks and benefits. The results offer guidance to HIV cure researchers and developers of interventions about the beneficial and detrimental characteristics of HIV cure strategies that are most meaningful to people living with HIV. The study also highlights new potential lines of inquiry for further social science and ethics research.http://www.sciencedirect.com/science/article/pii/S2055664020302958HIV cure researchwillingness to participateperceived risksperceived benefits |
| spellingShingle | Karine Dubé David Evans Laurie Sylla Jeff Taylor Bryan J. Weiner Asheley Skinner Harsha Thirumurthy Joseph D. Tucker Stuart Rennie Sandra B. Greene Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US Journal of Virus Eradication HIV cure research willingness to participate perceived risks perceived benefits |
| title | Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US |
| title_full | Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US |
| title_fullStr | Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US |
| title_full_unstemmed | Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US |
| title_short | Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US |
| title_sort | willingness to participate and take risks in hiv cure research survey results from 400 people living with hiv in the us |
| topic | HIV cure research willingness to participate perceived risks perceived benefits |
| url | http://www.sciencedirect.com/science/article/pii/S2055664020302958 |
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