Chronic Viral Illness Service, Division of Infectious Diseases, Department of Medicine, McGill University Health Centre (MUHC), Montreal, Canada.
Canadian Institutes of Health Research Strategy for Patient-Oriented Research Mentorship Chair in Innovative Clinical Trials, Montreal, Canada.
AIDS Res Hum Retroviruses. 2022 Aug;38(8):670-682. doi: 10.1089/AID.2022.0006. Epub 2022 Jul 28.
HIV cure research requires interrogating latent HIV reservoirs in deep tissues, which necessitates autopsies to avoid risks to participants. An HIV autopsy biobank would facilitate this research, but such research raises ethical issues and requires participant engagement. This study explores the willingness to participate in HIV cure research at the end of life. Participants include Canadians with HIV [people with HIV (PWHIV)] aged 55 years or older. Following a mixed-method study design, all participants completed a phone or online survey, and a subset of participants participated in in-depth phone or videoconference interviews. We produced descriptive statistics of quantitative data and a thematic analysis of qualitative data. Barriers and facilitators were categorized under domains of the Theoretical Domains Framework. From April 2020 to August 2021, 37 participants completed the survey (mean age = 69.9 years old; mean duration of HIV infection = 28.5 years), including 15 interviewed participants. About three quarters of participants indicated being willing to participate in hypothetical medical studies toward the end of life ( = 30; 81.1%), in HIV biobanking ( = 30; 81.1%), and in a research autopsy ( = 28; 75.7%) to advance HIV cure research, mainly for altruistic benefits. The main perceived risks had to do with physical pain and confidentiality. Barriers and facilitators were distributed across five domains: social/professional role and identity, environmental context and resources, social influences, beliefs about consequences, and capabilities. Participants wanted more information about study objectives and procedures, possible accommodations with their last will, and rationale for studies or financial interests funding studies. Our results indicate that older PWHIV would be willing to participate in HIV cure research toward the end of life, HIV biobanking, and research autopsy. However, a dialogue should be initiated to inform participants thoroughly about HIV cure studies, address concerns, and accommodate their needs and preferences. Additional work is required, likely through increased community engagement, to address educational needs.
HIV 治愈研究需要检测深部组织中的潜伏 HIV 储库，这需要进行尸检以避免对参与者造成风险。HIV 尸检生物库将促进这项研究，但此类研究引发了伦理问题，并需要参与者的参与。本研究探讨了在生命末期参与 HIV 治愈研究的意愿。参与者包括年龄在 55 岁及以上的加拿大 HIV 感染者（HIV 感染者）。采用混合方法研究设计，所有参与者都完成了电话或在线调查，一部分参与者参加了深入的电话或视频会议访谈。我们对定量数据进行了描述性统计分析，并对定性数据进行了主题分析。障碍和促进因素根据理论领域框架的领域进行了分类。2020 年 4 月至 2021 年 8 月，37 名参与者完成了调查（平均年龄为 69.9 岁；HIV 感染的平均持续时间为 28.5 年），其中包括 15 名接受采访的参与者。约四分之三的参与者表示愿意参与假设的生命末期医学研究（=30；81.1%）、HIV 生物库研究（=30；81.1%）和研究尸检（=28；75.7%），以推进 HIV 治愈研究，主要是为了获得利他主义的好处。主要的感知风险与身体疼痛和保密性有关。障碍和促进因素分布在五个领域：社会/职业角色和身份、环境背景和资源、社会影响、对后果的信念和能力。参与者希望获得更多关于研究目标和程序、遗嘱中可能的安排以及研究或资助研究的经济利益的理由的信息。我们的研究结果表明，年长的 HIV 感染者将愿意参与生命末期的 HIV 治愈研究、HIV 生物库研究和研究尸检。然而，应该启动对话，让参与者充分了解 HIV 治愈研究，解决关切问题，并满足他们的需求和偏好。需要做更多的工作，可能需要通过增加社区参与来满足教育需求。
