# Palliative and End of Life Care in Adolescent and Young Adult Heart Failure

> **NIH NIH K23** · UNIVERSITY OF MICHIGAN AT ANN ARBOR · 2020 · $127,337

## Abstract

PROJECT SUMMARY
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.

## Key facts

- **NIH application ID:** 9852610
- **Project number:** 5K23HL145096-02
- **Recipient organization:** UNIVERSITY OF MICHIGAN AT ANN ARBOR
- **Principal Investigator:** Melissa Kaye Cousino Hood
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $127,337
- **Award type:** 5
- **Project period:** 2019-09-01 → 2023-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9852610

## Citation

> US National Institutes of Health, RePORTER application 9852610, Palliative and End of Life Care in Adolescent and Young Adult Heart Failure (5K23HL145096-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9852610. Licensed CC0.

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