Goals of Care Discussions in Older Adults with Heart Failure and Their Caregivers

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 DESCRIPTION (provided by applicant): My career goal is to become an independent investigator whose work improves conversations between clinicians and older patients with advanced heart failure (HF) and their caregivers. This application proposes a five-year curriculum and research plan designed to facilitate my development to an independent investigator in patient-oriented aging research. During the five years of the award, I will expand my research training and experience through mentored research, formal coursework and self-directed learning activities and develop independence through leadership and networking opportunities. The work proposed in this application involves studying goals of care discussions (GOCD) in older adults with advanced HF. As one of the leading causes of death, hospitalization, readmission and Medicare costs, HF is associated with poor health-related quality of life, significant psychological distress and increased health care spending for patients and their caregivers. The complex and changing trajectory of advanced HF along with the available life-sustaining therapies makes decision-making more complex in older adults as compared to other serious illnesses. Recent data in advanced cancer patients demonstrate that GOCD result in improved patient and caregiver outcomes. Unlike cancer, HF patients have highly variable prognoses, invasive potential treatments associated with major lifestyle changes, and unpredictable symptom crises, which make it difficult to extrapolate findings from cancer to HF. This proposal aims to address this gap. We hypothesize that improved GOCD will result in improved patient outcomes (receipt of treatments aligned with preferences, better quality of life, less depression and anxiety and decreased utilization) and caregiver outcomes (less depression, anxiety and caregiver burden, and improved satisfaction) as compared to patients who do not have GOCD. The aims of these projects are: (SA1) to identify barriers and facilitators to GOCD in older adults with advanced HF and to identify patient and caregiver health-related outcomes associated with GOCD; (SA2) to develop and refine HF Connect, a HF- specific GOCD training module, to meet the unique needs of these patients and caregivers; and (SA3) to conduct a pilot RCT of PREPARE + HF Connect to determine feasibility of enrollment, efficacy to increase GOCD and advanced care planning behaviors, and satisfaction with the tailored module. To achieve the first aim, I will analyze a multicenter cohort of advanced HF patients and their caregivers to identify the factors that predict GOCD and outcomes of these conversations. Next, I will interview patient/caregiver dyads to identify barriers and facilitatorsof GOCDs. Using SA1 data, I will develop HF Connect and use cognitive interviews with patients, caregivers and clinicians to refine it (SA 2). Finally, I will conduct a small RCT of HF Connect (SA3) to determine its feasibility and efficacy. These studies will generate data that will allow m to secure R01-level funding to test HF Connect in a multicenter RCT. The proposed research and career development plan are initial steps toward improving the care of older adults with advanced HF and their caregivers.