Perceptions of Risks and Benefits of Participating in HIV Cure-related Research among Diverse Youth and Young Adults Living with HIV in the United States

项目摘要/摘要 在报道了柏林患者的长期艾滋病毒缓解病例后，许多研究已经进入 艾滋病毒治愈方法的生物医学发现，以及对动机、认知、欲望、需求和 正在为其研究治疗方法的人的经历。之前的研究已经检验了这种看法 主要利益攸关方对艾滋病毒治疗相关研究的风险和好处进行了评估。尽管有一些人探索过这一点 老年艾滋病毒携带者(PLWH)参与这项研究的意愿，没有人探索过 青年和青年艾滋病毒携带者的意愿。随着艾滋病毒治疗研究领域的继续 增长，因为数据显示艾滋病毒在年轻人中的高发病率，以及PLWH继续老龄化(变得不符合条件 对于HIV治愈研究)，YLWH将站在艾滋病毒治愈相关研究的决策前沿。 因此，有必要调查可能感知这项研究的风险和好处的青少年儿童的态度。 与较老的PLWH不同，他们最有可能受到艾滋病毒治疗技术进步的影响。 了解青瓦台对艾滋病毒治疗研究的偏好和态度比 永远不会。主要原因是青年妇女会比成年人更少参与艾滋病毒护理，在艾滋病毒中的代表性较低 研究，而且可能是受与治疗策略的风险和收益相关的决策影响最大的 与持续抗逆转录病毒治疗(ART)的对比。此外，他们对治愈的风险和好处的看法 研究可能不同于老年人，因为他们受益于较新的艺术 给药频率低、副作用小的治疗方案。他们也可能有不同的利他主义 对参与艾滋病毒治疗研究的态度与经历过历史的老年人的比较 不同时期和哪些人可能经历了国内艾滋病疫情的影响。 因此，调查不同人群对参与HIV治疗相关研究的态度 针对青少年儿童的全国样本，我们提出了一种定量和定性相结合的方法。 因此，我们的研究目标是： 目标1：探讨参与艾滋病毒的知识水平、兴趣、关注、激励因素和威慑因素 针对18-29岁艾滋病毒携带者的治疗研究。 目标2：量化参与艾滋病毒治疗研究的意愿、参与研究的动机和威慑力 艾滋病毒治愈研究，以及在青年会中对真实世界艾滋病毒治愈研究情景的回应。 这些数据将帮助未来的研究人员了解与YLWH进行研究的细微差别，提供 向他们提供青年健康院的数据，以作为其艾滋病毒治愈相关研究的基础，并通知他们招募人员 策略：指导希望建议他们的患者参与艾滋病毒治疗相关研究的临床医生； 在社区参与方法方面指导社区领袖；并让青瓦台的声音被听到 医学界和研究界。

Project Summary/Abstract Following the reported long-term HIV remission case of the Berlin patient, much research has gone into the biomedical discovery of an HIV cure and less inquiry into the motivations, perceptions, desires, needs, and experiences of the people for whom the cure is being researched. Prior studies have examined the perceptions of key stakeholders on the risks and benefits of HIV cure-related research. Although a few have explored this willingness in older people living with HIV (PLWH) to participate in this research, none have explored the willingness of youth and young adults living with HIV (YLWH). As the field of HIV cure research continues to grow, as data reveal the high HIV incidence among youth, and as PLWH continue to age (becoming ineligible for HIV cure research), YLWH will be at the forefront of decision-making on HIV cure-related research. Therefore, it is imperative to examine attitudes of YLWH who may perceive risks and benefits of this research differently from older PLWH and are most likely to be impacted by advances in HIV therapeutics. Understanding preferences and attitudes of YLWH towards HIV cure research is more critical than ever. The main reasons are that YLWH are less engaged in HIV care than adults, are less represented in HIV research, and are likely to be the most affected by decisions related to risks and benefits of cure strategies versus continuing antiretroviral therapy (ART). Furthermore, their perception of risks and benefits toward cure research are likely to be different from older individuals given that they have benefited from newer ART regimens that have low dosing frequency and few adverse effects. They may also have differing altruistic attitudes toward participating in HIV cure research compared to older adults having lived through a historically different period of time and who may have experienced the impacts of the domestic AIDS epidemic. Therefore, to investigate attitudes toward participating in HIV cure-related research among a diverse national sample of YLWH, we propose a mixed methods approach using quantitative and qualitative methods. Thus, our study aims are: Aim 1: To explore the level of knoweldge, interest, concerns, motivators, and deterrents of participating in HIV cure research among 18–29 year-olds living with HIV. Aim 2: To quantify willingness to participate in HIV cure research, motivators and deterrents of participating in HIV cure research, and responses to real-world HIV cure research scenarios among YLWH. These data will assist future researchers in the nuances of conducting research with YLWH, provide them with data on YLWH on which to base their HIV cure-related studies, and inform them of recruitment strategies; guide clinicians wishing to advise their patients about participation in HIV cure-related research; direct community leaders in community engagement methods; and allow the voices of YLWH to be heard by the medical and research communities.