Project Summary
Heart failure affects over 6.5 million adults and that number is quickly growing, especially in the diverse and
rural Southern populations where health disparities are highly prevalent. While patients could benefit from
recommended palliative care integration at diagnosis of advanced heart failure, most patients are referred late-
if at all. A major goal of palliative care in heart failure is aggressive symptom management which family
caregivers play an integral role in. To provide better quality care for advanced heart failure patients and family
caregivers, it is crucial to have information on disease and symptom trajectories to develop an individualized
treatment plan and to establish care consistent with patients' goals. Heart failure patients report as many as 19
co-occurring symptoms; however, there is limited research characterizing co-occurring symptom pattern
trajectories. Furthermore, there is little information about the relationship of these symptoms with the patient
and caregiver's quality of life individually and as a dyad. This proposed research study will address this
research gap and provide quantitative data on advanced heart failure symptom pattern trajectories including
the impact of caregiver support. The ultimate goal is to develop symptom management palliative care
interventions which improve symptom burden. This study leverages existing data collected from the parent
ENABLE: CHF-PC (Educate, Nurture, Advise, Before Life Ends, Comprehensive Heartcare for Patients and
Caregivers; 5R01NR013665; Bakitas PI) multisite randomized controlled trial. ENABLE CHF PC featured a
telehealth, palliative care intervention for Southern underserved and rural populations. The proposed study will
examine longitudinal symptom data from this parent study (3 time points) using latent variable modeling
analyses to address the unique specific aims: 1) identify and segregate distinct symptom pattern trajectories in
older adult palliative care intervention participants with advanced heart failure living in the Deep South and 2)
quantify associations between sociodemographic characteristics (such as race, gender, rurality, and dyadic
health), clinical/physiological characteristics, and symptom pattern trajectories. This proposed study is
consistent with the National Institute of Nursing Research goals of promoting personalized health strategies
and helping to manage and relieve symptoms and suffering in the palliative and end of life setting for diverse
populations. This NRSA proposal will serve as an essential foundation for the applicant's goal of developing as
an independent nurse scientist with a program of research aiming to improve the quality of life and symptom
burden of heart failure patients and their family caregivers using a palliative care paradigm through this
application's proposed training plan, the resources provided at the University of Alabama at Birmingham, and
guided mentorship on the relevant concepts of palliative care, family caregivers, heart failure symptom
management, health disparities, nursing science, advanced statistical analyses, and scientific dissemination.
