For the growing population of adolescents and young adults (AYAs; 12-24 years) with pediatric heart disease, survival comes at a cost due to increased risk of morbidity and mortality. Approximately 14,000 children experience heart-failure related hospitalizations annually. Among this group, 7% die during their hospitalization ? a mortality rate nearly 20 times greater than hat seen in hospitalized children without heart failure and more than double that in adult heart failure. The Institute of Medicine recently highlighted a critical need to better understand and improve medical decision making involvement of AYAs afflicted with serious illnesses across their disease trajectory and as they approach end of life. Yet, research on the end of life and palliative care needs of the growing AYA heart failure population is very limited, despite alarmingly high rates of invasive and costly interventions at the end of life for this group. The current proposal seeks to address gaps in research and practice through three specific aims via two separate studies:
Aim 1) To ascertain the end of life care needs and preferences of pediatric heart failure patients and parents via qualitative descriptive research. Quantitative measures of disease severity, health-related quality of life, and trust in physician will be used to further describe the sample.
Aim 2) To describe provider communication of prognosis, hope, and advance care planning (e.g., Do Not Resuscitate, Hospice) topics through audio-recorded conversations with AYA cardiology patients and/or their families. A priori hypotheses will not be tested for Aims 1 and 2 given their qualitative nature. Themes will be determined for future hypothesis-driven research.
Aim 3) To develop and pilot a provider-directed end of life care communication intervention. It is hypothesized that intervention participation will lead to increased provider use of rapport and partnership building statements and greater physician communication of prognosis, hope, and advance care planning topics. In addition to these three research aims, the K23 proposal includes a robust four-year research training plan. With the support of an interdisciplinary team of expert mentors and advisors, Study PI will gain experiences in qualitative research, pediatric palliative care and bioethics, and randomized intervention trial design and statistical analysis. Training goals will be accomplished through didactic coursework; mentored studies and frequent interactions with mentors and advisors; and seminars, meetings, conferences and workshops. This K23-supported research training and foundational data will enable Study PI to obtain long-term career goals, which include the development and implementation of an R01-funded multi-site, end of life communication-focused computerized intervention trial for pediatric cardiology providers.
Despite notable advancements in treatment and intervention, young people with acquired and congenital heart disease, the most common birth defect, experience high rates of morbidity and mortality. This research seeks to address gaps in knowledge by increasing our understanding of the end of life care needs of adolescents and young adults with heart failure. An end of life care communication-focused intervention will be piloted with a long-term goal of improving the delivery of patient-centered care at end of life with reductions in patient suffering and use of invasive, life-extending interventions.
