“We Need to Deploy Them Very Thoughtfully and Carefully”: Perceptions of Analytical Treatment Interruptions in HIV Cure Research in the United States—A Qualitative Inquiry

Dubé, Karine; Evans, David; Dee, Lynda; Sylla, Laurie; Taylor, Jeff; Skinner, Asheley Cockrell; Weiner, Bryan J.; Greene, Sheila; Rennie, Stuart; Tucker, Joseph D.

doi:10.1089/aid.2017.0067

Cited by 57 publications

(79 citation statements)

References 67 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The biggest difference in trade-offs was that physicians were more concerned about outcomes whereas PLWH were more concerned about their quality of life (consultation frequency and moderate SE). In line with previous research [3,12,15,18], this result might indicate that PLWH motivations to participate were more altruistic than individual. It also underlines the need for physicians to consider moderate SE and not only severe SE.…”

Section: Discussionsupporting

confidence: 92%

“…HIV altruism is one important motivator influencing willingness to participate in HCRCT [3,12,15,18], reflecting the historical advocacy and joint mobilization of PLWH in response to HIV epidemic [1,2,20,21]. Altruistic-based benefits, such as participating in research for the benefit of future generations, have been shown to be part of the value associated with some health programmes [22][23][24].…”

mentioning

confidence: 99%

See 1 more Smart Citation

Differences in HIV cure clinical trial preferences of French people living with HIV and physicians in the ANRS‐APSEC study: a discrete choice experiment

et al. 2020

View full text Add to dashboard Cite

Introduction Despite the advent of HIV cure‐related clinical trials (HCRCT) for people living with HIV (PLWH), the risks and uncertainty involved raise ethical issues. Although research has provided insights into the levers and barriers to PLWH and physicians' participation in these trials, no information exists about stakeholders' preferences for HCRCT attributes, about the different ways PLWH and physicians value future HCRCT, or about how personal characteristics affect these preferences. The results from the present study will inform researchers' decisions about the most suitable HCRCT strategies to implement, and help them ensure ethical recruitment and well‐designed informed consent. Methods Between October 2016 and March 2017, a discrete choice experiment was conducted among 195 virally controlled PLWH and 160 physicians from 24 French HIV centres. Profiles within each group, based on individual characteristics, were obtained using hierarchical clustering. Trade‐offs between five HCRCT attributes (trial duration, consultation frequency, moderate (digestive disorders, flu‐type syndrome, fatigue) and severe (allergy, infections, risk of cancer) side effects (SE), outcomes) and utilities associated with four HCRCT candidates (latency reactivation, immunotherapy, gene therapy and a combination of latency reactivation and immunotherapy), were estimated using a mixed logit model. Results Apart from severe SE – the most decisive attribute in both groups – PLWH and physicians made different trade‐offs between HCRCT attributes, the latter being more concerned about outcomes, the former about the burden of participation (consultation frequency and moderate SE). These different trades‐offs resulted in differences in preferences regarding the four candidate HCRCT. PLWH significantly preferred immunotherapy, whereas physicians preferred immunotherapy and combined therapy. Despite the heterogeneity of characteristics within the PLWH and physician profiles, results show some homogeneity in trade‐offs and utilities regarding HCRCT. Conclusions Severe SE, not outcomes, was the most decisive attribute determining future HCRCT participation. Particular attention should be paid to providing clear information, in particular on severe SE, to potential participants. Immunotherapy would appear to be the best HCRCT candidate for both PLWH and physicians. However, if the risk of cancer could be avoided, gene therapy would become the preferred strategy for the latter and the second choice for the former.

show abstract

Section: Discussionsupporting

confidence: 92%

mentioning

confidence: 99%

Differences in HIV cure clinical trial preferences of French people living with HIV and physicians in the ANRS‐APSEC study: a discrete choice experiment

et al. 2020

View full text Add to dashboard Cite

show abstract

“…For example, one study performed in Thailand found that participants in HIV cure research were motivated by giving back to their community and by the potential benefits not only to themselves but also to the investigators and others with HIV 7 . Additional studies have found similar other‐oriented motivations 8 …”

mentioning

confidence: 99%

“…7 Additional studies have found similar other-oriented motivations. 8 People's willingness to take risk for an HIV cure also goes beyond the clinical or health benefit, and the fact that people living with HIV are often quite healthy does not preclude the possibility that a cure would significantly improve their overall quality of life. 9 The value of a cure may lie in quality-of-life factors such as destigmatization, liberation from concerns of transmitting HIV to others, and freedom from the burden of daily medication.…”

mentioning

confidence: 99%

HIV Cure Research: Risks Patients Expressed Willingness to Accept

Kratka

Ubel

Scherr

et al. 2019

Ethics & Human Research

View full text Add to dashboard Cite

Despite doing well on antiretroviral therapy, many people living with HIV have expressed a willingness to accept substantial risks for an HIV cure. To date, few studies have assessed the specific quantitative maximal risk that future participants might take; probed whether, according to future participants, the risk can be offset by the benefits; and examined whether taking substantial risk is a reasonable decision. In this qualitative study, we interviewed 22 people living with HIV and used standard gamble methodology to assess the maximum chance of death a person would risk for an HIV cure. We probed participants’ reasoning behind their risk‐taking responses. Conventional inductive content analysis was used to categorize key themes regarding decision‐making. We found that some people would be willing to risk even death for an HIV cure, and some of their reasons were plausible and went far beyond the health‐related utility of an HIV cure. We contend that people's expressed willingness to take substantial risk for an HIV cure should not be dismissed out of hand.

show abstract

“…It is well understood that initial HIV cure clinical studies will not lead to complete removal of the virus and will pose substantial risks to study participants . Some HIV cure clinical studies will require an intensively monitored ART pause (IMAP), also often referred to as analytical treatment interruption (ATI), to demonstrate efficacy of interventions .…”

Section: Introductionmentioning

confidence: 99%

Applying the Behavioural and Social Sciences Research (BSSR) Functional Framework to HIV Cure Research

et al. 2019

Self Cite

View full text Add to dashboard Cite

Introduction The search for an HIV cure involves important behavioural and social processes that complement the domains of biomedicine. However, the field has yet to tap into the full potential of behavioural and social sciences research (BSSR). In this article, we apply Gaist and Stirratt’s BSSR Functional Framework to the field of HIV cure research. Discussion The BSSR Functional Framework describes four key research domains: (1) basic BSSR (understanding basic behavioural and social factors), (2) elemental BSSR (advancing behavioural and social interventions), (3) supportive BSSR (strengthening biomedically focused clinical trials), and (4) integrative BSSR (building multi‐disciplinary combination approaches for real‐world implementation). In revisiting and applying the BSSR Functional Framework, we clarify the importance of BSSR in HIV cure research by drawing attention to such things as: how language and communication affect the meaning of “cure” to people living with HIV (PLHIV) and broader communities; how cure affects the identity and social position of PLHIV; counselling and support interventions to address the psychosocial needs and concerns of study participants related to analytical treatment interruptions (ATIs); risk reduction in the course of ATI study participation; motivation, acceptability, and decision‐making processes of potential study participants related to different cure strategies; HIV care providers’ perceptions and attitudes about their patients’ participation in cure research; potential social harms or adverse social events associated with cure research participation; and the scalability of a proven cure strategy in the context of further advances in HIV prevention and treatment. We also discuss the BSSR Functional Framework in the context of ATIs, which involve processes at the confluence of the BSSR domains. Conclusions To move HIV cure regimens through the translational research pathway, attention will need to be paid to both biomedical and socio‐behavioural elements. BSSR can contribute an improved understanding of the human and social dimensions related to HIV cure research and the eventual application of HIV cure regimens. The BSSR Functional Framework provides a way to identify advances, gaps and opportunities to craft an integrated, multi‐disciplinary approach at all stages of cure research to ensure the real‐world applicability of any strategy that shows promise.

show abstract

“We Need to Deploy Them Very Thoughtfully and Carefully”: Perceptions of Analytical Treatment Interruptions in HIV Cure Research in the United States—A Qualitative Inquiry

Cited by 57 publications

References 67 publications

Differences in HIV cure clinical trial preferences of French people living with HIV and physicians in the ANRS‐APSEC study: a discrete choice experiment

Differences in HIV cure clinical trial preferences of French people living with HIV and physicians in the ANRS‐APSEC study: a discrete choice experiment

HIV Cure Research: Risks Patients Expressed Willingness to Accept

Applying the Behavioural and Social Sciences Research (BSSR) Functional Framework to HIV Cure Research

Contact Info

Product

Resources

About