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

美国不同的艾滋病毒感染者对参与艾滋病毒治疗相关研究的风险和益处的看法

• 批准号: 10011703
• 负责人: Karine Dube
• 金额: $ 25.3万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-04-01 至 2022-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10011703
• 关键词: Acquired Immunodeficiency Syndrome; Adult; Adverse effects; Affect; Age; Altruism; Attitude; Behavioral; Behavioral Sciences; Benefits and Risks; Berlin; Caring; Characteristics; Clinical; Communities; Consent; Data; Decision Making; Discrimination; Disease remission; Dose; Elderly; Epidemic; Frequencies; Future; Generations; Goals; Grant; HIV; HIV therapy; Hearing; Incidence; Individual; Interruption; Interview; Medical Research; Methods; Motivation; Participant; Patients; Perception; Pharmaceutical Preparations; Population; Public Health; Qualitative Methods; Regimen; Reporting; Research; Research Ethics; Research Personnel; Risk; Sampling; Social Sciences; Structure; Surveys; Therapeutic; Time; Treatment Efficacy; United States; United States Food and Drug Administration; United States National Institutes of Health; Viral; Voice; Youth; antiretroviral therapy; base; curative treatments; experience; improved; interest; preference; recruit; response; risk perception; social; social stigma; willingness; young adult

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.

项目总结/摘要 在报道了柏林患者的长期艾滋病毒缓解病例后，许多研究已经进入了 艾滋病毒治疗的生物医学发现，以及对动机、看法、愿望、需求和 研究治愈方法的人的经历。先前的研究已经检查了 艾滋病毒治疗相关研究的风险和益处。虽然有一些人已经探索了这一点 老年艾滋病毒感染者（PLWH）愿意参加这项研究，没有人探索 青年和青年艾滋病毒感染者的意愿。随着艾滋病毒治疗研究领域的不断发展， 随着数据显示青年人中艾滋病毒的高发病率以及艾滋病毒携带者继续老龄化（变得不符合资格）， 艾滋病毒治疗研究），YLWH将处于艾滋病毒治疗相关研究决策的最前沿。 因此，有必要检查YLWH的态度，他们可能会认为这项研究的风险和收益 艾滋病毒感染者与老年艾滋病毒感染者不同，最有可能受到艾滋病毒治疗进展的影响。 了解YLWH对艾滋病毒治疗研究的偏好和态度比 史以来主要原因是，YLWH参与艾滋病毒护理的人数少于成年人， 研究，并可能是最受影响的决定有关的风险和好处的治疗策略 与持续抗逆转录病毒治疗（ART）相比。此外，他们对治愈的风险和益处的看法 研究可能与老年人不同，因为他们受益于较新的ART 给药频率低且副作用少的方案。他们也可能有不同的利他主义 与经历过历史性艾滋病的老年人相比， 不同时期和可能经历过国内艾滋病疫情影响的人群。 因此，为了调查不同人群对参与艾滋病治疗相关研究的态度， 国家样本的YLWH，我们提出了一个混合方法的方法，使用定量和定性方法。 因此，我们的研究目标是： 目的1：探讨参与艾滋病防治的知识水平、兴趣、关注点、动机和阻碍因素 18-29岁艾滋病毒感染者的治愈研究。 目标2：量化参与艾滋病毒治疗研究的意愿、参与研究的动机和阻碍因素 艾滋病毒治疗研究，以及对YLWH中现实世界艾滋病毒治疗研究方案的反应。 这些数据将有助于未来的研究人员在与YLWH进行研究的细微差别，提供 向他们提供关于YLWH的数据，作为他们进行艾滋病毒治疗相关研究的基础，并告知他们招募情况 策略;指导希望建议患者参与艾滋病毒治疗相关研究的临床医生; 指导社区领导人参与社区活动的方法;并让YLWH的声音被听到 医学和研究界。