Acceptability, motivation and the prospect of cure for people living with HIV and their healthcare providers in HIV cure-focused treatment interruption studies

Abstract

Background Analytical treatment interruptions (ATI) are commonly used clinical endpoints to assess interventions aimed at curing HIV or achieving antiretroviral therapy (ART)-free HIV remission. Understanding the acceptability of ATI amongst people living with HIV (PLHIV) and their HIV healthcare providers (HHP) is limited. Methods Two online surveys for PLHIV and HHP assessed awareness and acceptability of ATI, and understanding of the prospect for HIV cure in the future. Responses were collected from July 2017-January 2018. A descriptive analysis was performed and similar questions across the two surveys were compared using χ squared test. Results 442 PLHIV and 144 HHP completed the survey. 105/400 (26%) PLHIV had ever interrupted ART, 8% of which were in a clinical trial. Altruistic motivations were drivers of participation of PLHIV in cure related research. 81/135 (60%) HHP would support their patients wishing to enrol in an HIV cure-focused trial, but fewer would promote and allow such participation (25% and 31% respectively). Compared to HHP, PLHIV were more likely to believe that an HIV cure would be achievable within 10 years (55% vs 19%, p<0.001), had less awareness of ATI (46% vs 62%,p<0.001) and were less likely to have had experience of either participation or enrolment in an ATI study (5% vs 18%,p<0.001) Conclusion PLHIV were more optimistic about the potential for HIV cure. HHP had more direct experience with HIV cure-focused studies. Educational strategies are required for both groups to increase understanding around ATIs in HIV cure research but should be tailored specifically to each group.

The RIO Trial: Rationale, Design, And The Role of Community Involvement In A Randomised Placebo-Controlled Trial of Antiretroviral Therapy Plus Dual Long-Acting HIV-Specific Broadly Neutralising Antibodies (bNAbs) In Participants Diagnosed With Recent HIV Infection - Study Protocol For A Two-Stage Randomised Phase II Trial

“…Or that access to ART can affect levels of interest in different countries. (24)(25)(26)(27) The inclusion of community representations therefore strengthened our study design. It resulted in easier to understand participant information, with easier readability, including an animated video.…”

HIV cure: an acceptability scientific agenda

“…As biomedical scientists work to find an effective, well tolerated, affordable and scalable HIV cure, there is a need to engage other stakeholders, including PLWH and their healthcare providers, to determine their acceptability of HIV cure and willingness to participate in trials. Most studies show that patients and caregivers know little about the HIV cure strategies that are being developed [48,52]. Education and advocacy is therefore crucial to bring home the message of HIV cure to stakeholders so they are involved in proposing strategies and designs of cure that they are willing to accept.…”

“…Studies on ATI show that there may be sex and regional differences in acceptability. An international online survey comprising mainly PLWH in Europe and America found that patients were willing to take substantial risks without guarantee of benefit including 62% who would undergo ATI [48]. Being an online survey, motivated participants may have self-selected to influence the results.…”

“…It is important to emphasize that many stakeholders in the fight against HIV do not fully understand the modalities involved in ATI, the implications and the risks associated [37,48], while those who know about it have limited understanding of the full implications [52]. One mitigation factor for ATI is when patients know their partners will be protected from getting infected [47,52,53,54 && ].…”

“It comes altogether as one:” perceptions of analytical treatment interruptions and partner protections among racial, ethnic, sex and gender diverse HIV serodifferent couples in the United States

“…Given this risk, understanding the perspectives of HIV serodifferent partners is important for many reasons: 1) risk of secondary HIV transmission increases when the partner with HIV is taken off ART [ 20 ], 2) HIV prevention and treatment decisions are often made as a couple [ 21 ], 3) primary partners influence one another’s behaviors [ 22 ], 4) partner considerations, if not taken into account could limit participation in ATI research, and 5) perspectives of HIV serodifferent partners can inform protocols to protect partners during ATIs. In the context of ATI research [ 23 ], there is a need to gather perspectives from diverse PWH [ 16 ].…”