Table 2.
Recommendations for Research Priorities
| Research priority | Study objective | Range of settings | Sample | Study design | Policy initiatives |
|---|---|---|---|---|---|
| • Development and evaluation of new palliative care delivery models for subspecialty services | • Integrate palliative care principles into subspecialty practices and cultures • Determine the best palliative care model fit for different subspecialties, for example, trigger consults, embedded, primary PC, nurse led • Determine the effectiveness of early versus late palliative care |
• Academic and community hospitals, outpatient clinics, home care programs, nursing homes, office practices | • Large • Serious and critically ill patients and their family members. Diagnoses: COPD, HF, CKD, high-risk surgical patients, patients in ICU • Patients newly diagnosed with COPD, HF, CKD, or other serious chronic diseases |
• Randomized trials, quasi-experimental designs, Comparative Effectiveness Research, Implementation studies, policy analysis • Prospective and retrospective cohort studies, randomized trials, quasi-experimental studies |
Congress: Care Planning Act of 2017, GME reform, PCHETA Funders: PCORI, NIH, AHRQ, CMMI |
| • Determination of effective and cost-effective specific palliative care interventions | • Evaluate interventions to decrease symptom burden and improve quality of life • Identify the most effective components of multifaceted interventions • Improve communication and decision making among patients, families, and team members to reduce conflict and ensure goal concordant care. |
• Academic and community hospitals, outpatient clinics, home care programs, nursing homes, office practices | • Large • Serious and critically ill patients, their family members, and caregivers. Diagnoses: COPD, HF, CKD, high-risk surgical patients, patients in ICU |
• Randomized trials, including patient-level randomization and cluster randomization; innovative experimental designs, economic modeling, policy analysis • Qualitative and mixed methods studies running parallel to intervention studies. Cohort studies • Comparative Effectiveness Research, randomized trials, cluster randomized trials, pragmatic trials |
Congress: Care Planning Act of 2017, The CHRONIC Care Act of 2017, GME reform, PCHETA Funders: PCORI, NIH, AHRQ, CMMI |
| • Development and validation of patient- and family-centered outcomes | • Validate palliative care outcomes that are of value and that matter to patients and families | • Academic and community hospitals, outpatient clinics, home care programs, nursing homes, office practices | • Large • Serious and critically ill patients and their family members. Diagnoses: COPD, HF, CKD, high-risk surgical patients, patients in ICU |
• Psychometric research, longitudinal descriptive studies, prospective and retrospective cohort studies, randomized trials, quasi-experimental studies | Congress: CHRONIC Care Act of 2017 Funders: PCORI, NIH, AHRQ, CMMI |
| • Determination of Caregiver needs | • To create interventions to improve caregiver burden and distress | • Inpatient and outpatient settings, home care programs | • Medium • Caregivers of patients with advanced chronic illnesses, for example, COPD, HF, CKD |
• Cohort studies, qualitative and mixed methods studies | Congress: CHRONIC Care Act of 2017 Funders: PCORI, NIH, AHRQ, CMMI |
AHRQ, Agency for Healthcare Research and Quality; CKD, Chronic Kidney Disease; CMS, Center for Medicare Services; CMMI, Centers of Medicare and Medicaid Innovation; COPD, Chronic Obstructive Pulmonary Disease; GME, Graduate Medical Education; HF, Heart Failure; ICU, Intensive Care Unit; NIH, National Institutes of Health; PCHETA, Palliative Care and Hospice Education and Training Act; PCORI, Patient-Centered Outcomes Research Initiatives.