Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Australia.
Centre for Social Research in Health, University of NSW, Sydney, Australia.
PLoS One. 2018 Aug 24;13(8):e0202647. doi: 10.1371/journal.pone.0202647. eCollection 2018.
Participation in HIV cure-related clinical trials that involve antiretroviral treatment (ART) interruption may pose substantial individual risks for people living with HIV (PLHIV) without any therapeutic benefit. As such, it is important that the views of PLHIV are considered in the design of HIV cure research trials. Examining the lived experience of PLHIV provides unique and valuable perspectives on the risks and benefits of HIV cure research. In this study, we interviewed 20 PLHIV in Australia about their knowledge and attitudes toward clinical HIV cure research and explored their views regarding participation in HIV cure clinical trials, including those that involve ART interruption. Data were analysed thematically, using both inductive and deductive coding techniques, to identity themes related to perceptions of HIV cure research and PLHIV's assessment of the possible risks and benefits of trial participation. Study findings revealed interviewees were willing to consider participation in HIV cure research for social reasons, most notably the opportunity to help others. Concerns raised about ART interruption related to the social and emotional impact of viral rebound, including fear of onward HIV transmission and anxiety about losing control. These findings reveal the ways in which PLHIV perspectives deepen our understanding of HIV cure research, moving beyond a purely clinical assessment of risks and benefits in order to consider the social context.
参与涉及抗逆转录病毒治疗 (ART) 中断的 HIV 治愈相关临床试验可能会给 HIV 感染者 (PLHIV) 带来实质性的个体风险,而没有任何治疗益处。因此,在设计 HIV 治愈研究试验时,考虑 PLHIV 的观点非常重要。研究 PLHIV 的生活经历为 HIV 治愈研究的风险和益处提供了独特而有价值的观点。在这项研究中,我们采访了澳大利亚的 20 名 PLHIV,了解他们对临床 HIV 治愈研究的知识和态度,并探讨了他们对参与 HIV 治愈临床试验的看法,包括涉及 ART 中断的临床试验。我们使用归纳和演绎编码技术对数据进行了主题分析,以确定与 HIV 治愈研究的看法以及 PLHIV 对试验参与的可能风险和益处的评估相关的主题。研究结果表明,受访者愿意出于社会原因考虑参与 HIV 治愈研究,最主要的是有机会帮助他人。关于 ART 中断的担忧与病毒反弹的社会和情感影响有关,包括对 HIV 传播的恐惧和对失去控制的焦虑。这些发现揭示了 PLHIV 的观点加深了我们对 HIV 治愈研究的理解的方式,超越了对风险和益处的纯粹临床评估,以考虑社会背景。