Adapting a disclosure decision-aid to improve HIV outcomes for older adults in Ukraine

调整披露决策援助以改善乌克兰老年人的艾滋病毒结果

• 批准号: 10693381
• 负责人: Julia Rozanova
• 金额: $ 22.34万
• 依托单位: YALE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-01 至 2025-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10693381
• 关键词: Acquired Immunodeficiency Syndrome; Aging; Appointment; Caring; Central Asia; Child health care; Clinical; Communities; Conflict (Psychology); Consultations; Data; Decision Aid; Decision Making; Development; Diagnosis; Disclosure; Distal; Eastern Europe; Elderly; Elements; Ensure; Evidence based intervention; Family; Fostering; Friends; Funding; Goals; HIV; HIV diagnosis; Health Benefit; Healthcare; Hotlines; Incidence; Intervention; Knowledge; Link; Maternal and Child Health; Measures; Mental Health; Modeling; Outcome; Participant; Partner Notification; Patients; Persons; Pharmaceutical Preparations; Population; Primary Care; Public Health; Randomized; Reaction; Recommendation; Reporting; Research Assistant; Resources; Risk; Self Administration; Self Perception; Social Workers; Social support; Standardization; Stigmatization; Support Groups; Testing; Time; Training; Trust; Ukraine; Viral; Withdrawal; Work; acceptability and feasibility; anxiety symptoms; comorbidity; depressive symptoms; disability-adjusted life years; effectiveness/implementation trial; empowerment; evidence base; experience; follow-up; frailty; health related quality of life; implementation measures; improved; improved outcome; innovation; insight; low and middle-income countries; mortality; multidisciplinary; patient-level barriers; peer; pilot test; primary outcome; social stigma; success; support network; systemic barrier; tool; treatment as usual; two-arm study; working group

Ukraine, an emblematic LMIC in Eastern Europe and Central Asia (EECA), is the only world region with increasing HIV incidence and mortality. Among the 360,000 PWH in Ukraine, OPWH account for 25% of people with HIV but are 1.7 times more likely to have AIDS at diagnosis, 51% less likely to start ART, and 3.6 times more likely to be lost to follow-up than those <50 years old. PWH who disclose their HIV status are more likely to achieve better social support and HIV outcomes. But in Ukraine 66% of OPWH have not disclosed their HIV status and are 20% less likely to adhere to ART in the last month, and twice less likely to adhere to therapy for non-HIV comorbidities, than peers who disclosed. As long-term geriatric care outside of the family in Ukraine is limited, HIV disclosure decision to support networks is essential when planning for HIV care over aging. But disclosure interventions to date have prioritized sexual/IDU partner notification and maternal and child health care, while overlooking disclosure to OPWH support networks. Decision Aid (DA) can facilitate informed decisions based on patient's unique needs and values. With input from Community Working Group (CWG) we established in Ukraine, we intend to tailor DA for OPWH using ADAPT-ITT, an evidence-based adaptation strategy, to develop PORADA (Pursuing Optimal Results over Aging via Decision Aid, “porada” means “advice” in Ukrainian), and pilot test it to assist OPWH make HIV disclosure decisions aligned with their needs. To help participants weigh pros and cons and empower them to stay in care in case of stigmatizing reactions, PORADA will include culturally relevant quotes from OPWH representing key populations, and links to local resources like hotlines and support groups for PWH. During the pilot RCT Research Assistants will deliver PORADA with a brief consultation to 80 OPWH who have at least one person they consider important to them to whom they have not disclosed their HIV status, compared to 40 OPWH receiving TAU. Randomization will be stratified by time since HIV diagnosis and participants will be followed for 12 months. Outcomes will include measures of acceptability, feasibility, and preliminary efficacy. We hypothesize that PORADA will increase HIV disclosure (primary outcome) relative to TAU. We will also collect data on decisional conflict, supportive vs stigmatizing reactions to disclosure, social support, intersectional stigma, and several HIV and non-HIV indicators, to understand potential distal outcomes, which will be exploratory. Public health benefit is high given growing OPWH numbers globally, high levels of OPWH non-disclosure, and poor HIV outcomes including high mortality. Innovation is high based on the adaptation of a DA for OPWH, focus on HIV disclosure to support networks, and assessing disengagement from HIV and non-HIV care. To ensure compatibility with the community, findings will be shared with stakeholders including a Community Working Group (peers, clinicians), funders (PEPFAR, Global Fund), and implementers (MoH, NGOs) to inform development of a hybrid implementation effectiveness trial with wide dissemination of the decision aid in Ukraine, US, and globally.

乌克兰是东欧和中亚的一个象征性的低收入国家，是世界上唯一一个 艾滋病毒的发病率和死亡率不断上升。在乌克兰36万名PWH中，OPWH占25%的人 艾滋病毒感染者，但在诊断时患艾滋病的可能性高1.7倍，开始抗逆转录病毒治疗的可能性低51%， 比50岁以下的患者更有可能失访。透露自己艾滋病毒感染状况的威尔斯亲王医院 以获得更好的社会支持和艾滋病毒防治成果。但在乌克兰，66%的OPWH没有透露他们的艾滋病毒 在最后一个月坚持ART的可能性降低了20%，坚持治疗的可能性降低了两倍。 非艾滋病合并症，比同龄人谁披露。在乌克兰，家庭以外的长期老年人护理 有限，艾滋病毒披露决定，以支持网络是至关重要的，当规划艾滋病毒护理老龄化。但 迄今为止，披露干预措施优先考虑性/注射吸毒者伴侣的通知以及孕产妇和儿童健康 照顾，而忽视披露OPWH支持网络。决策援助（DA）可以促进知情 根据患者的独特需求和价值观做出决定。根据社区工作组（CWG）的意见， 在乌克兰成立后，我们打算使用ADAPT-ITT（一种基于证据的改编）为OPWH量身定制DA 战略，开发PORADA（通过决策辅助追求老龄化的最佳结果，“porada”的意思是“建议”） 乌克兰文），并对其进行试点测试，以协助OPWH做出符合其需求艾滋病毒披露决定。帮助 与会者权衡利弊，并授权他们留在照顾的情况下，污名化的反应，PORADA 将包括OPWH代表关键人群的文化相关引用，以及与当地资源的链接， 威尔斯亲王医院的热线和支持小组。在试点RCT期间，研究助理将提供PORADA， 向80名OPWH提供简短咨询，这些OPWH至少有一名他们认为重要的人， 没有透露艾滋病毒感染状况，而40名OPWH接受了TAU。随机化将按时间分层 因为艾滋病毒诊断和参与者将被跟踪12个月。成果将包括以下措施： 可接受性、可行性和初步疗效。我们假设PORADA将增加艾滋病毒的披露 （主要结局）相对于TAU。我们还将收集关于决策冲突、支持与污名化的数据 对信息披露、社会支持、交叉污名以及一些艾滋病毒和非艾滋病毒指标的反应， 了解潜在的远端结局，这将是探索性的。公共卫生效益很高， OPWH的全球数字，OPWH不披露的程度高，艾滋病毒结果差，包括死亡率高。 创新性很高，因为OPWH适应了发展议程，注重艾滋病毒披露以支持网络， 评估脱离艾滋病毒和非艾滋病毒护理。为了确保与社区的兼容性，调查结果将 与利益相关者共享，包括社区工作组（同行、临床医生）、资助者（PEPFAR、全球 基金）和实施者（卫生部、非政府组织），为混合实施有效性试验的发展提供信息， 在乌克兰，美国和全球范围内广泛传播决策援助。