Assessing and Promoting Resilience in Patients with Adult Congenital Heart Disease
Patients with adult congenital heart disease (ACHD) live with life-long chronic illness that can adversely affect quality of life and cause early mortality. They face complex social and emotional challenges, in part because of impaired psychosocial development related to their disease. They report poor quality of life and feel ill-equipped to cope with the impact of illness and navigate health care decisions. Palliative care offers great opportunity to improve the medical care of these patients, but evidence-based palliative care is not yet incorporated into ACHD care. Resilience, harnessing personal resources to sustain well-being in the face of stress, is a promising target for palliative care intervention because it promotes self-efficacy and improves quality of life. The long-term goal of this award is to promote Dr. Steiner’s development into an independent physician scientist working to improve palliative care for patients with ACHD. The “Promoting Resilience in Stress Management” (PRISM) intervention has demonstrated efficacy in improving quality of life and alleviating psychological distress among adolescents and young adults with cancer and their parents, and in other chronic illnesses. Dr. Steiner will conduct a pilot randomized study to evaluate the feasibility and preliminary efficacy of PRISM to enhance resilience in patients with ACHD. Dr. Steiner proposes a career development curriculum with the following learning objectives: 1) research in psychological function and behavioral interventions, 2) clinical trial design, implementation, and statistical analysis, and 3) advanced qualitative research methods. The proposed project will take place within the robust intellectual environment offered by the University of Washington, where she will have available the vast resources of the Division of Cardiology and the Cambia Center for Palliative Care Excellence. In this rapidly-growing population of patients with ACHD, identifying ways to maximize quality of life and incorporate palliative care will ultimately encourage healthcare engagement and enhance patient care.
Jill M. Steiner, MD, MS,
is a cardiologist at the University of Washington in Seattle, WA. Her
research examines palliative care needs in patients with adult congenital heart
disease. Her goal is to improve quality of care and outcomes by enhancing
palliative care application in this population. Dr. Steiner earned
her medical degree at Penn State and completed her internal medicine residency
at Georgetown University. She completed her cardiology fellowships, Master of
Science in epidemiology, and a research fellowship in palliative care at
the University of Washington.