All CIPC pilot studies focus on improving palliative care for adults with multiple chronic conditions. Every CIPC pilot captures common data elements including basic demographics, palliative care data elements specified by the Palliative Care Research Collaborative (PCRC)–diagnosis, performance status, type of care, and symptoms–fatigue, pain, and affective well-being.
Exploring the Risks and Benefits Associated With Antibiotic Use From the Perspective of Nursing Home Residents and Their Families
Principal Investigator: Eileen Carter, PhD, RN
Over half of nursing home patients receive an antibiotic in their last six months of life, but about 40 percent of prescribed antibiotics in nursing homes are thought to be unnecessary. Antibiotic overuse can fuel the rise of antibiotic-resistant microbes and expose patients to the risks of adverse drug reactions, such as nausea and diarrhea, as well as infection. This study assesses the quantitative relationship between antibiotic use and symptom burden to better understand why and how often these medications are being administered. Patients and families are also surveyed to determine the degree to which antibiotic use conforms to or conflicts with their goals for palliative care.
Exploring the Symptoms Experienced by and the Amelioration Strategies Used by Chinese-Americans With End-Stage Renal Disease
Principal Investigator: Carolyn Sun, PhD, RN
Asian Americans are less likely than members of other ethnic groups to use hospice or palliative care, for reasons that include different cultural expectations at the end of life, as well as language barriers. For patients with end-stage renal disease—1.5 times more prevalent in Asian Americans than in Caucasians—palliative care can help avoid months of suffering. This study collects data on symptoms and existing care strategies for more than 30 elderly Chinese Americans with end-stage renal disease (which is often accompanied by multiple chronic conditions), who receive care from the Visiting Nurse Service of New York. Participants are enlisted into focus groups to help develop a palliative care model that incorporates elements from traditional Chinese medicine.
Developing a Comprehensive Program of Primary Palliative Care for Vulnerable Patients with Multiple Chronic Conditions
Principal Investigator: Bevin Cohen, PhD, MS, MPH, RN
One third of adults in the United States are living with multiple chronic conditions (MCC), defined as at least two co-occurring chronic diseases. Given the complex and dynamic care needs of patients with MCC, which are typically managed in fragments across multiple specialty providers, this group of patients is vulnerable to inadequate symptom control, poor disease management, unplanned emergency and acute care admissions, and high costs accounting for more than 70% of total healthcare spending. Efforts to improve care quality while simultaneously reducing utilization and cost for patients with MCC have proliferated over the last decade, particularly since the establishment of Accountable Care Organizations (ACOs) under the Affordable Care Act. Unfortunately, large-scale value-based care initiatives focused mainly on care coordination and punitive financial incentives have fallen short of projected goals.
The Development and Pilot Testing of a Brief Shared Decision-Making Intervention to Improve Palliative Care Outcomes for Adults with Advanced Lung Disease
Principal Investigator: Maureen George, PhD, RN, AE-C, FAAN
This study addresses the important problem of adults with symptomatic advanced lung disease (ALD) (e.g. chronic obstructive pulmonary disease [COPD]; interstitial lung disease [ILD]) who are at high risk for poor outcomes. Palliative care (PCare) improves the quality of life of individuals and their caregivers through the prevention and relief of suffering by identifying, assessing and treating the physical, psychosocial and spiritual problems associated with life-threatening illness. However, pulmonary clinicians rarely refer adults with ALD to PCare because of time demands10, a lack of confidence in PCare and the perceived threat PCare poses to the relationship they have established with the ALD adult. Therefore, to bring changes to PCare for ALD adults, pragmatic trials are essential but are lacking in ALD intervention research.
Principal Investigator: Jiyoun Song, PhD, AGACNP-BC, APRN
Managed Long-Term Care (MLTC) is a system of integrating care at home that aims to reduce negative outcomes, such as rehospitalizations, while also minimizing healthcare costs. Although palliative care can be beneficial for patients in MLTC, not all patients accept it. Therefore, understanding the barriers and facilitators of palliative care acceptance is crucial. When patients interact with healthcare providers, they share information and seek information, especially in verbal conversations during which they can express explicit details (e.g., observations, feelings, and needs) that can give important clues about their palliative care preferences. The study investigates patient-case manager verbal conversations, utilizing advanced data science methods like speech recognition technology, to extract insights and gain a patient perspective on palliative care preferences.