Palliative care for rare advanced lung diseases in underserved Appalachia: Study protocol for a randomized controlled...

Area of Science:

• Palliative Care
• Rare Diseases
• Home Health Nursing

Background:

• West Virginia faces high lung disease mortality, with inadequate home end-of-life and palliative care for underserved populations.
• Rare advanced lung diseases present unique challenges for patients and family caregivers.
• A nurse-led home-based palliative care intervention was piloted in rural Appalachia.

Purpose of the Study:

• To pilot test a home end-of-life and palliative care intervention for patients with rare advanced lung diseases and their family caregivers.
• To estimate effect-size for power analysis in a future clinical trial.
• To assess the intervention's impact on breathlessness, caregiver anxiety and depression, and advance care planning.

Main Methods:

• A parallel randomized controlled trial design with 1:1 allocation to intervention or control groups.
• Intervention group received standard care plus bi-weekly home palliative care coaching by experienced community nurses.
• Primary outcome: breathlessness (Shortness of Breath Scale). Secondary outcomes: caregiver anxiety/depression, advance directives, intervention helpfulness.

Main Results:

• The study successfully enrolled patients and caregivers, demonstrating feasibility in a rural Appalachian setting.
• Enrolment was facilitated by collaboration with pulmonologists for patient screening and referrals.
• Results will inform the design and power calculations for a future definitive clinical trial.

Conclusions:

• This pilot study provides initial evidence for a nurse-led home-based palliative care intervention for rare advanced lung diseases.
• Findings support the development of evidence-based home nursing care and supportive end-of-life planning for this population.
• Collaboration with clinicians is crucial for successful recruitment in rare disease research.