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

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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.