ArticleJournal of virus eradication2017
Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US.
Article in Journal of virus eradication, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 56 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
56 citing papers in PubMed, 1 synthesis or guideline pooled it, 65 citations in OpenAlex.
- The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives.AIDS and behavior · 2023Pooled it
- Participant Perspectives in an HIV Cure-Related Trial Conducted Exclusively in Women in the United States: Results from AIDS Clinical Trials Group 5366.AIDS research and human retroviruses · 2020Trial
- Ethics of treatment interruption trials in HIV cure research: addressing the conundrum of risk/benefit assessment.Journal of medical ethics · 2018Trial
- Framing a Consent Form to Improve Consent Understanding and Determine How This Affects Willingness to Participate in HIV Cure Research: An Experimental Survey Study.Journal of empirical research on human research ethics : JERHRETrial
- Trial Enrollment Correlates in an HIV Status-Neutral mHealth Intervention Among Young Black and Latinx Men and Transgender Women Who have Sex with Men.AIDS and behavior · 2026Article
- Understanding of HIV cure research in a rural community with high prevalence: the case of uMkhanyakude district, KwaZulu-Natal, South Africa.AIDS research and therapy · 2025Article
- "Sometimes They Exclude Us because of Our Age-That's Not Right": Perceptions of HIV Cure Research Among Diverse Long-Term Survivors in the United States.AIDS research and human retroviruses · 2025Article
- The expected impact of a cure for HIV among people with HIV and key populations.Communications medicine · 2025Article
- Antiretroviral pause for HIV remission trials: A mixed methods study of people living with HIV in Soweto, South Africa.PLOS global public health · 2025Article
- Relatively high interest but limited active engagement in HIV cure research: Awareness, interest, and information-seeking among affected communities in the Netherlands.Journal of virus eradication · 2024Article
- "This Is Actually a Really Unique Moment in Time": Navigating Long-Acting HIV Treatment and HIV Cure Research with Analytical Treatment Interruptions-A Qualitative Interview Study in the United States.AIDS research and human retroviruses · 2024Article
- Vulnerability in Biomedical Research: A Historical Reflection and Practical Implications for HIV Cure-Related Research.AIDS research and human retroviruses · 2024Article
- Decision making for invasive and non-invasive optional procedures within an acute HIV research cohort in Bangkok.Contemporary clinical trials communications · 2023Article
- Healthcare Provider Perspectives on HIV Cure Research in Ghana.AIDS research and treatment · 2023Article
- Perceptions of Risks and Benefits of Participating in HIV Cure-Related Research Among Diverse Young Adults Living with HIV in the United States: Qualitative Research Findings.AIDS research and human retroviruses · 2022Article
- Willingness of Older Canadians with HIV to Participate in HIV Cure Research Near and After the End of Life: A Mixed-Method Study.AIDS research and human retroviruses · 2022Article
- Community HIV clinicians' perceptions about HIV cure-related research in the Northwestern United States.HIV research & clinical practice · 2022Article
- Perceptions of HIV cure and willingness to participate in HIV cure-related trials among people enrolled in the Netherlands cohort study on acute HIV infection.Journal of virus eradication · 2022Article
- Attitudes About Analytic Treatment Interruption (ATI) in HIV Remission Trials with Different Antiretroviral Therapy (ART) Resumption Criteria.AIDS and behavior · 2022Article
- Awareness of HIV functional cure and willingness in participating in related clinical trials: comparison between antiretroviral naïve and experienced men who have sex with men living with HIV.BMC infectious diseases · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 5 institutions in 1 country.
Funding
Abstract
introductionParticipation 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.
methodsWe 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.
resultsWe 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.
conclusionOur 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.
Indexed as
Identifiers
28275457PMC5337420W2997311727What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.