Table 3.

Proposed Research Priorities and Sample Trial Designs for Improving the Science of Palliative Care for Patients with Advanced Heart Failure

No.	Research priority	Study objective	Study setting	Sample	Study design
1	To better understand advanced HF patients' limiting symptoms and focus treatment on their relief	To better understand treatments (pharmacologic and nonpharmacologic) for symptoms of patients with advanced HF (pain, fatigue, anxiety, depression)—assess both improvement in symptoms but also tolerability of side effects and relationship to HF exacerbations	Academic and community/inpatient and outpatient	Stage C and D HF Patients	RCT of medications/treatments for symptoms, with detailed assessment of medication side effects (as applicable)
2	To better characterize and address the needs of the caregivers of advanced HF patients	To create interventions to improve caregiver burden and distress	Academic and community/inpatient and outpatient	Caregivers of patients with advanced HF	Cohort study to better elucidate needs and then interventions to improve burdens and increase caregiver activation
3	To improve patient and family understand of disease trajectory and importance of advance care planning	To create effective and timely communication techniques focused on advance care planning for patients with HF and their caregivers	Academic medical centers may be the place to begin this work	Stage C and D HF patients	Innovative RCTs of interventions to improve advance care planning, as well as determine effect of interventions on patient-centered outcomes
4	To determine the best models of palliative care, including models for those who want to continue life-prolonging therapies	To better understand the individual elements of a specialist palliative care intervention and determine the impact of each of these elements on outcomes important to clinicians, patients, and family caregivers. (i.e., what's in the palliative care syringe?)	Needed in both inpatient and outpatient settings, as the syringe might be different	Stage C and D HF patients	Cohort study or adaptive trial design with data collection designed to determine exposure to each of the individual elements conveyed in the delivery of specialty level palliative care
		To determine effective models to empower and teach primary cardiology staff to better apply principles of palliative care in the domains of symptom management, communication, and psychosocial support	Outpatient academic and community settings	Clinicians caring for patients with HF: Physicians (HF specialists, general cardiologists, primary care); nurses (NP and RN); physician assistants, social work	Pre–post education intervention or RCT of intervention delivery
		To determine the best models to deliver care to patients who may not want advanced therapies but also are not ready for hospice	Academic medical centers may be the place to begin this work	Patients with Stage D HF	Adaptive trial design using predetermined patient and family centered outcomes

Studies should account for differences in terms of patients who may or may not be candidates for advanced therapies.

NP, nurse practioner; RCT, randomized control trial; RN, registered nurse.