A Patient-Centered Approach to Research on Palliative Care for Patients With Advanced Illnesses and Their Caregivers

Abstract

Background People with advanced, serious illnesses experience a high burden of physical and psychosocial symptoms, limitations in functioning, and declining quality of life (QOL) over the course of their illness. Caring for these patients can take a significant physical and emotional toll on their caregivers as well. Palliative care has been defined as ''patient-and family-centered care that optimizes QOL by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.'' 1,2 Evidence reviews show that receipt of palliative care can provide clinically meaningful relief of a broad range of patient symptoms, reduce caregiver burden, and improve patient and caregiver QOL. 3e5 At the same time, patients and caregivers report significant barriers to receiving comprehensive palliative care services (i.e., care that facilitates advance care planning [ACP] and medical decision-making, systematically assesses and manages patient symptoms, and addresses caregiver burden). Access to comprehensive palliative care is typically limited to either inpatient hospitals or endof-life hospice settings. Thus, patients who are not terminally ill and their caregivers report an unmet need for receiving palliative care where they live (i.e., in their communities). 6 The challenge of accessing effective palliative care services is only expected to exacerbate, due to increasing demand from the aging U.S. population with multiple comorbid health conditions and limited supply from a projected shortage of competent clinicians to provide these services. 5 There is an urgent need for research studies to generate evidence for identifying the optimal mix of providers, settings, and content of palliative care needed at different stages of an advanced illness, from diagnosis until death. In the following section, we discuss the Patient-Centered Outcome Research Institute's (PCORI's) current and future investments in research on palliative care.

A Portfolio Analysis of Culturally Tailored Trials to Address Health and Healthcare Disparities

“…Patient engagement, a guiding principal which drives the PCORI research agenda, establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients’ wants, needs, and preferences, and that patients have the education and support they need to make decisions and participate in their own care [ 39 ]. PCORI works to engage patients and stakeholders in every phase of research, with a goal of better understanding treatment effects, which may differ across patient populations [ 18 ].…”

“…PCORI funds comparative clinical effectiveness research (CER) that addresses important health and healthcare-related dilemmas faced by patients, caregivers, clinicians, and health systems. By comparing two or more interventions for which evidence of efficacy already exists, and by engaging key patients and stakeholders throughout the research process, PCORI-funded trials have the potential to accelerate the dissemination and implementation of research findings in real-world settings [ 18 ]. PCORI, through its Addressing Disparities research portfolio, has made significant investments in trials that conduct CER to address health and healthcare disparities.…”

Follow the trail: Using insights from the growth of palliative care to propose a roadmap for cancer rehabilitation

“…Federal funding through the National Institutes of Health (NIH) and its centers has provided both research and training grants in palliative care . The Patient‐Centered Outcomes Research Institute also has funded comparative effectiveness studies in palliative care . Palliative care scientists have established research consortia to facilitate multisite palliative care trials and to develop the research capacity of investigators to build the evidence base for palliative care .…”

“…73,74 The Patient-Centered Outcomes Research Institute also has funded comparative effectiveness studies in palliative care. 75 Palliative care scientists have established research consortia to facilitate multisite palliative care trials and to develop the research capacity of investigators to build the evidence base for palliative care. 76,77 These consortia, along with palliative care funding opportunities from the American Cancer Society (ACS) and the American Academy of Hospice and Palliative Medicine, have included an investment in investigator training and professional development, ensuring the future development of the field.…”

Comparative Clinical Effectiveness Research Focused on Community-Based Delivery of Palliative Care: Overview of the Patient-Centered Outcomes Research Institute's Funding Initiative

“…1,7 In response to these recommendations and unmet research needs, PCORI identified CER on palliative care as a priority area for funding. 15 In March 2016, PCORI convened a large multistakeholder palliative care workgroup meeting attended by 82 stakeholders that included patients, patient and caregiver advocates, clinicians, palliative care researchers, representatives of public and private payers, federal and private research funding organizations, clinical specialty societies, and industry representatives. The public was also invited to listen to the discussion at the workshop.…”