nursing-driven primary palliative care for urban-dwelling african americans with chronic lung disease

Conditions: Chronic Obstructive Pulmonary Disease

Summary: in prior work, this research team developed a telehealth primary care model (tipc), designed in close partnership with patients and clinicians to address a widespread increase in telehealth use during the covid-19 pandemic. researchers will test the tipc intervention to assess palliative care (pc) support for patients with chronic obstructive pulmonary disease (copd) among a population of urban-dwelling, african american (aa) persons over the course of 15 months. the aims of this study are to 1) evaluate patient, caregiver, and clinical team perspectives of feasibility and acceptability of the tipc model with urban-dwelling aas with advanced copd, and 2) explore the impact of tipc intervention on knowledge and completion of advanced care planning (acp) and on hospice and healthcare utilization patterns in the target population, as well as on additional quality of life (qol) endpoints, and compare these between individuals participating in the intervention group and control group.

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). follow-up phone calls will be made to those who have not responded at approximately 3-7 day intervals. intervention subjects will partake in 2 telehealth visits as a part of the tipc model. the first visit between patient, caregiver, and pc specialist will facilitate a patient-centered consultation guided by the serious illness conversation guide and involving patient completion of several pc assessments (i.e. palliative performance scale,). the second visit between patient, caregiver, pc specialist and a pulmonology clinician/nurse will involve collaborative pc plan development and management and modeling of pc skills in an mdt framework. this research team has trained staff to assess digital literacy and access barriers amongst all research participants. they will guide patients through accessing mychart, creating an email (if needed), and perform test telehealth visits with patients prior to the scheduled clinical telehealth visits. if a patient is not able to connect at the time of their scheduled telehealth visit, a team member will call them via phone to again assist, as needed. this research team has ample experience with this, having created and deployed both the telehealth task force (ttf) in the sidney kimmel cancer center (overseen by dr. worster) and the dot (digital onboarding taskforce) (overseen by dr. rising). evaluation of patient outcomes of the tipc model will be ongoing across 6 months. implementation outcomes will be measured amongst intervention patients. feasibility, acceptability, and satisfaction collected via self-report will be collected at tipc implementation and post-visit 2. intervention uptake measured via chart review for references to the patient's pc plan in clinical encounters and pc plan-based referrals/adoptions will be analyzed over 6 months post-intervention. clinical outcomes will be measured for both subjects and controls. advance care planning and healthcare proxy designation will be collected over 6 months via chart review, hospice use will be collected over 6 months via chart review for hospice enrollment and length of stay (los), and avoidable healthcare utilization events will be collected over 6 months via chart review for ed visits, urgent care (non-scheduled) visits, hospitalizations, and los with 'chief complaints' collected for each participant. additional follow-up outcomes of knowledge of acp will be collected at 3 and 6 months and health-related qol, and caregiver burden will be collected at baseline, 3 and 6 months for both subjects and controls via self-reporting.

Eligibility criteria:
inclusion criteria: * copd diagnosis * age 18 years or older exclusion criteria: * traumatic brain injuries * incarceration * homelessness * developmental disorders * pregnancy