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
基本信息
- 批准号:10011703
- 负责人:
- 金额:$ 25.3万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 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:
- 关键词:Acquired Immunodeficiency SyndromeAdultAdverse effectsAffectAgeAltruismAttitudeBehavioralBehavioral SciencesBenefits and RisksBerlinCaringCharacteristicsClinicalCommunitiesConsentDataDecision MakingDiscriminationDisease remissionDoseElderlyEpidemicFrequenciesFutureGenerationsGoalsGrantHIVHIV therapyHearingIncidenceIndividualInterruptionInterviewMedical ResearchMethodsMotivationParticipantPatientsPerceptionPharmaceutical PreparationsPopulationPublic HealthQualitative MethodsRegimenReportingResearchResearch EthicsResearch PersonnelRiskSamplingSocial SciencesStructureSurveysTherapeuticTimeTreatment EfficacyUnited StatesUnited States Food and Drug AdministrationUnited States National Institutes of HealthViralVoiceYouthantiretroviral therapybasecurative treatmentsexperienceimprovedinterestpreferencerecruitresponserisk perceptionsocialsocial stigmawillingnessyoung adult
项目摘要
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。
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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{{ truncateString('Karine Dube', 18)}}的其他基金
Integrating Trauma-Informed Research in Assessment of Young Women Engaged in HIV Cure Research (Post-Intervention Control) Trial with Analytical Treatment Interruption in Durban, South Africa
将创伤知情研究纳入南非德班参与艾滋病毒治疗研究(干预后控制)试验的年轻女性与分析治疗中断的评估中
- 批准号:
10761531 - 财政年份:2023
- 资助金额:
$ 25.3万 - 项目类别:
Investigating Psychosocial Experiences of HIV Cure Trial Participants Undergoing Extended HIV Treatment Interruptions: Implications for Ethical Conduct
调查长期艾滋病毒治疗中断的艾滋病毒治疗试验参与者的心理社会经历:对道德行为的影响
- 批准号:
10325217 - 财政年份:2021
- 资助金额:
$ 25.3万 - 项目类别:
Investigating Psychosocial Experiences of HIV Cure Trial Participants Undergoing Extended HIV Treatment Interruptions: Implications for Ethical Conduct
调查长期艾滋病毒治疗中断的艾滋病毒治疗试验参与者的心理社会经历:对道德行为的影响
- 批准号:
10647752 - 财政年份:2021
- 资助金额:
$ 25.3万 - 项目类别:
Investigating Psychosocial Experiences of HIV Cure Trial Participants Undergoing Extended HIV Treatment Interruptions: Implications for Ethical Conduct
调查长期艾滋病毒治疗中断的艾滋病毒治疗试验参与者的心理社会经历:对道德行为的影响
- 批准号:
10438929 - 财政年份:2021
- 资助金额:
$ 25.3万 - 项目类别:
Pilot Integration of Participant-Centered Outcomes in HIV Cure Research in the United States: Implications for Ethical Conduct
美国艾滋病毒治疗研究中以参与者为中心的成果试点整合:对道德行为的影响
- 批准号:
9905559 - 财政年份:2019
- 资助金额:
$ 25.3万 - 项目类别:
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