Almost 6 million Americans live with heart failure with 1/2 million new cases diagnosed each year. Within the first year of diagnosis 1 in 5 will die, with 80% dying within 8 years of diagnosis. Yet, less than 10% of patients are offered supportive or palliative care services beyond basic medical care. This proposal aims to fill the gap in our knowledge about the experience of living with heart failure in patient-caregiver dyads by exploring the unique needs of these dyads with 1-year or 2-year predicted survival with various patterns of medical instability and medical stability across the terminal heart failure trajectory and across two care delivery systems with diverse populations.
The specific aims are: 1) To identify the critical variations in palliative care needs of patient-caregiver dyads between patients with a 1-year predicted survival and a 2-year predicted survival including variations in patterns of medical instability and medical stability, care delivery systems, and population demographics (age, gender, ethnic/racial) and 2) To develop an algorithm that specifies type and timing of individualized palliative care interventions to meet the needs of patient-caregiver dyads based on variations across the terminal heart failure trajectory. One hundred patient-caregiver dyads (total sample n=200 [patients and caregivers]) who are followed in internal medicine/family practice sites at two healthcare delivery systems: Penn State Hershey Medical Center and Harrisburg Hospital, Pinnacle Health Systems, will be recruited. Fifty patients and their caregivers that have a 1-year predicted survival and 50 patients and their caregivers with a 2-year predicted survival will be enrolled. Dyads will be interviewed monthly for up to 24 months (or until the death of the patient) to explore the palliative care needs of these dyads as they traverse the terminal heart failure trajectory. At the conclusion of this project, we will have thik, rich descriptions of the terminal heart failure experience including the dyad's palliative care needs, which needs were met and which have not been addressed, which types of palliative care interventions were offered and accepted, timing of interventions, and areas to be explored in terms of new interventions to meet these needs. We will make a significant contribution to evidence-based practice by building an algorithm available for translation into clinical practice a a guideline for targeted palliative care interventions for heart failure patient-caregiver dyads. This algorithm should be able to guide interventions based on predicted survival, 1-year versus 2-year and other characteristics of the patient, caregiver, and the dyad as a whole. This algorithm will be ready to be tested along with palliative care intervention in a supportive clinicl trial with a larger and more diverse population of heart failure patient-caregiver dyads.
In the United States, the number of people living with heart failure is on the rise;affecting 5.8 million people with 1/2 million new cases added each year. Living with the disabling effects of heart failure changes the face of life for the patient-caregivr dyad. One of the difficulties of living with heart failure is that the illness trajectory of heart ailure is unpredictable. Thus, the provision of services beyond medical management is severely lacking prior to the point when the patient has end-stage refractory heart failure. This project is significant because it will result in an algorithm that will specify type and time of palliative cae interventions based on 1-year versus 2-year predicted survival for patient- caregiver dyads from diverse populations.
