PROJECT SUMMARY
Patients with adult congenital heart disease (ACHD) live with a life-long chronic illness that has the potential to
adversely affect quality of life and cause early mortality. They experience varied levels of physical and
cognitive disability and face complex social and emotional challenges, in part because of impaired
psychosocial development related to their disease. They report poor health-related quality of life and feel ill-
equipped to effectively cope with the impact of illness and navigate difficult health care decisions. Palliative
care offers great opportunity to strengthen quality of life and improve the medical care of patients with ACHD,
but evidence-based palliative care is not yet incorporated in ACHD care. Resilience, harnessing personal
resources to sustain physical and emotional 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. Dr. Steiner will evaluate resilience as it relates to health-related
psychosocial outcomes and adapt and test a successful resilience intervention 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 has
been successfully adapted for patients with other chronic illnesses and their parents. In Aim 1 of this proposal,
Dr. Steiner will conduct a prospective cohort study to determine the association between resilience and specific
patient-centered psychosocial outcomes, namely quality of life and psychological distress, in patients with
ACHD. In Aim 2, she will use semi-structured qualitative interviews to understand patients’ knowledge of and
perspectives regarding resilience. She will assess the acceptability of PRISM and identify ways to refine its
content for this patient population. Aims 1 and 2 will inform Aim 3, in which she will conduct a pilot randomized
trial to evaluate the feasibility and preliminary efficacy of the PRISM intervention to enhance resilience in
patients with ACHD. To support her career development, Dr. Steiner proposes an integrated curriculum with
the following learning objectives: 1) research in psychological function and behavioral interventions, 2)
advanced qualitative research methods, 3) clinical trial design, implementation, and statistical analysis, and 4)
grant and manuscript preparation. The proposed project activities will take place within the robust intellectual
environment offered by the University of Washington, an institution with a strong commitment to the
development of investigators’ academic research careers, and 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 is essential
and will ultimately encourage healthcare engagement and enhance patient care.