Almost 5 million Americans, most over age 65, carry a diagnosis of heart failure (HF). Despite treatment advances, 50% will die within 5 years; increasing age and rural environment are risk factors associated with the greatest HF morbidity and mortality. In the year before death, HF patients will experience multiple hospitalizations and personal and economic costs of unrelieved physical and emotional suffering. Currently, only 19% of Medicare-aged HF patients (and their family caregivers) access beneficial palliative care services, compared with more than half of advanced cancer patients. Older patients with HF and their caregivers, rarely have access to palliative supportive care services because the disease is unpredictable and palliative treatment may not be provided until after other medical treatments have been tried. We and others have demonstrated in advanced cancer that concurrent palliative care achieves beneficial outcomes in quality of life (QOL), symptom burden, depression, and in some case survival. The intervention is adapted from our successful palliative care model for cancer (ENABLE: Educate, Nurture, Advise, Before-Life- Ends). Our overall goal is to test the efficacy of a concurrent HF palliative care model in reducing the morbidity of living with advanced HF. This randomized controlled trial (RCT) will compare the quality of life, symptom burden, mood, and the quality of chronic illness and end-of-life care in 380 older adults with NYHA stage III/IV HF and 228 caregivers. Half of the patient participants (n=190) will be randomized to the intervention and half (n=190) will receive usual HF care.
The specific aims of the RCT; ENABLE: CHF-PC (Comprehensive Heart care for Patients and Caregivers), are to 1) Determine whether ENABLE: CHF-PC leads to higher advanced HF patient-reported QOL and mood (depression/anxiety); and lower symptom burden and resource use (e.g. hospital admissions and days, emergency visits) at 8 and 16 weeks after baseline and to 2) Determine whether ENABLE: CHF-PC leads to higher caregiver-reported QOL, mood (anxiety/depression), and self-reported health and lower caregiver burden at 8 and 16 weeks after baseline. The relevance of this research to public health is that there is an urgent need to improve the routine care of older adults in rural areas with advanced heart failure and their caregivers. This study will contribute substantially to that effort.
Advanced heart failure affects nearly 6 million Americans, and less is known about how this illness affects the 80% of heart failure patients who are 65 years and older because research tends to focus on younger patients. Older patients with heart failure and their family caregivers, rarely have access to palliative supportive care services because the disease is unpredictable and palliative treatment may not be provided until after other medical treatments have been tried. We are studying whether palliative care provided when advanced heart failure patients are still well will result in better quality of life, mood and less symptom distress compared to usual heart failure care.
|Dionne-Odom, J Nicholas; Applebaum, Allison J; Ornstein, Katherine A et al. (2018) Participation and interest in support services among family caregivers of older adults with cancer. Psychooncology 27:969-976|
|Ejem, Deborah; Bauldry, Shawn; Bakitas, Marie et al. (2018) Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter? J Palliat Care 33:100-108|
|Dionne-Odom, J Nicholas; Taylor, Richard; Rocque, Gabrielle et al. (2018) Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation. J Pain Symptom Manage 55:1519-1530|
|Dionne-Odom, J Nicholas; Demark-Wahnefried, Wendy; Taylor, Richard A et al. (2017) The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer 25:2437-2444|
|Kavalieratos, Dio; Gelfman, Laura P; Tycon, Laura E et al. (2017) Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities. J Am Coll Cardiol 70:1919-1930|
|Nicholas Dionne-Odom, J; Hooker, Stephanie A; Bekelman, David et al. (2017) Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review. Heart Fail Rev 22:543-557|