Nursing-Driven Primary Palliative Care for Urban-Dwelling African Americans With Chronic Lung Disease

African Americans with chronic lung disease (CLD) experience higher-cost, lower-quality care (i.e. more untreated symptoms, poorer provider communication, care inconsistent with practices, lower hospice enrollment) compared to their white counterparts. Uptake of PC and ACP is also substantially lower amongst AAs and other underrepresented minorities (URMs) due to disparate access to information and mistrust in the healthcare system as generated by systemic, structural racism. Additionally, there are existing gaps in Jefferson's own PC program as revealed by our team's preliminary research into the program's level of cultural literacy. Interviews with black, indigenous people of color (BIPOC) enrolled with Jefferson PC revealed issues of clinician color blindness, an increased need for family engagement, and gaps in considering race and relationship to black pain in PC delivery.

This study will enroll 20 patients from Jefferson's Center City campuses. Half of the participants will be given the TIPC intervention, the other half will be assigned as controls who will receive their usual standard of care. All participants will be assessed over 6 months to assess changes in outcomes. Specifically amongst intervention patients, researchers will evaluate implementation outcomes (feasibility, acceptability, satisfaction, intervention uptake) of TIPC intervention at intervention start, post-visit 2, and 6 months after. Both intervention and control participants will be assessed for knowledge of ACP at 3 and 6 months, and health-related QOL, and caregiver burden at baseline, 3 months and 6 months.

Researchers will also measure clinical outcomes amongst both intervention and control patients (advance care planning and healthcare proxy designation, hospice use, avoidable healthcare utilization events) over 6 months.

Researchers will directly reach out to several departments including: Department of Medicine (Division of Pulmonary, Division of Hospital Medicine, and Division of Internal Medicine), Department of Family and Community Medicine, and Department of Emergency Medicine to identify patients (and, as applicable, their designated caregivers) for recruitment.

Once potential participants are identified, research team members will screen for eligibility criteria using EPIC. Recruitment will continue for all patients and caregivers until the anticipated enrollment goal for each group are reached (10 intervention, 10 controls).