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.
Advanced heart failure is characterized by progressive symptom burden and an unpredictable disease trajectory which makes it difficult for health care providers to know the appropriate timing for referral of patients to palliative care services which are proven to reduce symptom burden and improve quality of life. There is a lack of research examining the stability of symptom pattern trajectories in advanced heart failure and relevant factors that are associated with these symptom pattern trajectories such as race, gender, rurality and social support - especially in the diverse populations living in the Deep South of the United States. The proposed study will provide information for researchers and health care providers to develop effective advanced symptom management strategies that will ultimately improve quality of life and symptom burden for advanced heart failure patients and their family caregivers.