Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Australia.
Centre for Social Research in Health, UNSW Australia, Sydney, Australia.
PLoS One. 2020 Mar 4;15(3):e0229733. doi: 10.1371/journal.pone.0229733. eCollection 2020.
Most people living with HIV (PLHIV) with reliable access to antiretroviral treatment (ART) have a life expectancy similar to uninfected populations. Despite this, HIV can negatively affect their social and psychological wellbeing. This study aimed to enhance understanding of the expectations PLHIV hold for HIV cure research and the implications this has for HIV cure research trials. We interviewed 20 Australian PLHIV about their expectations for HIV cure research outcomes and the impact a potential cure for HIV may have on their everyday lives. Data were analysed thematically, using both inductive and deductive approaches. The significance of a cure for HIV was expressed by participants as something that would offer relief from their sense of vigilance or uncertainty about their health into the future. A cure was also defined in social terms, as alleviation from worry about potential for onward HIV transmission, concerns for friends and family, and the negative impact of HIV-related stigma. Participants did not consider sustained medication-free viral suppression (or remission) as a cure for HIV because this did not offer certainty in remaining virus free in a way that would alleviate these fears and concerns. A cure was seen as complete elimination of HIV from the body. There is an ethical need to consider the expectations of PLHIV in design of, and recruitment for, HIV cure-related research. The language used to describe HIV cure research should differentiate the long-term aspiration of achieving complete elimination of HIV from the body and possible shorter-term therapeutic advances, such as achieving medication free viral suppression.
大多数能够可靠获得抗逆转录病毒治疗 (ART) 的艾滋病毒感染者 (PLHIV) 的预期寿命与未感染者相似。尽管如此，艾滋病毒仍会对他们的社会和心理健康产生负面影响。本研究旨在增进对 PLHIV 对 HIV 治愈研究的期望的理解，以及这对 HIV 治愈研究试验的影响。我们采访了 20 名澳大利亚 PLHIV，了解他们对 HIV 治愈研究结果的期望，以及 HIV 治愈可能对他们日常生活产生的影响。数据采用归纳和演绎的方法进行主题分析。治愈 HIV 的意义被参与者表达为一种能够减轻他们对未来健康的警惕感或不确定性的方式。治愈也从社会角度来定义，即减轻对潜在艾滋病毒传播的担忧、对朋友和家人的担忧，以及艾滋病毒相关耻辱感的负面影响。参与者并不认为无药物抑制病毒（或缓解）是 HIV 的治愈方法，因为这不能保证在没有病毒的情况下消除这些恐惧和担忧。治愈被视为完全从体内消除 HIV。在设计和招募与 HIV 治愈相关的研究时，有必要考虑 PLHIV 的期望。用于描述 HIV 治愈研究的语言应区分从身体中彻底消除 HIV 的长期愿望和可能的短期治疗进展，例如实现无药物抑制病毒。
