Palliative Care Coaching for Families With Rare Advanced Lung Diseases

Nearly 15 million Americans and greater than 10% of West Virginia (WV) residents live with
and eventually die from Rare and Advanced Lung Diseases (R-ALD), including pneumoconiosis
(i.e., dust, asbestos), and idiopathic pulmonary fibrosis. Patients with R-ALD experience
refractory breathlessness, depression, fatigue, and extreme worry about their family members
and cost of health care. With one of the highest incidences of lung disease deaths in the
nation, there is great need for home EOLPC in the rural, disadvantaged communities of WV. The
proposed EOLPC intervention (FamPALcare) is based on R-ALD experts' input, national EOLPC
guidelines, and the PI's published EOLPC studies with breathlessness in end-stage heart
failure (HF) patients.

This project is well-aligned with the National Institutes of Health (NIH) priority specific
to "Appalachian populations experiencing extreme inequities and poor access to healthcare"
and the NIH PAR on palliative care for family caregivers and patients with advanced lung
diseases. The PI's NIH application review, which received a positive score, stated that this
project will have a high impact on improving palliative care for rural families managing lung
disease and the project can be translated to other rural communities. This is an initial
study of coaching home-based palliative R-ALD care in rural Appalachia. The NIH review stated
using the PI's culturally sensitive approaches for R-ALD was novel for chronic lung disease.
Also, addressing both family caregivers' and patients' needs was noted as innovative and
increased the potential for future funding, as was the rigorous protocol for observing
intervention fidelity.

This study uses a random control group comparison design to test the implementation of the
FamPALcare intervention with R-ALD patients and their primary family caregiver. Specific aims
are to: (1) pilot test the FamPALcare nursing care intervention with patients and family
members managing home supportive EOLPC for R-ALD and (2) collect research data to report in
the PI's NIH resubmission and future trials. The control patients receive standard care given
through the WVU hospital and outpatient clinics, prescribed by the patient's pulmonologist,
and recorded in the medical record. The FamPALcare intervention group receives all standard
care plus 2 weeks of home EOLPC coaching by community nurses experienced in EOLPC. Data will
be collected at baseline, month one, and month three from patients and caregivers
independently. This pilot study provides testing of our research guides and procedures that
will be described to enhance the NIH resubmission and will determine power needed for the
future RCT design.

Inclusion Criteria:

- Adult patients diagnosed with R-ALD, and their primary family caregivers dyad.

- All participants must be alert and oriented.

- Be able to read and write in English.

Exclusion Criteria:

- Patients who have received or are on a waiting list for a lung transplant

- Patients diagnosed with another terminal illness.