Idiopathic Pulmonary Fibrosis Clinical Trial
Official title:
Integrating Palliative Care for Patients With Idiopathic Pulmonary Fibrosis and Their Caregivers
Patients with Idiopathic Pulmonary Fibrosis (IPF) and their caregivers will be randomized to
receive this intervention or usual care. The intervention will include information about the
disease, self-management strategies, and introduction to advanced care planning in a format
with enhanced content available across multiple domains (face-to-face, printed material,
digital (tablet) delivered by an interventionist. The usual care group will be provided with
routine printed patient education.
At the end of life, IPF patients and their caregivers experience stress, symptom burden, poor
quality of life, and inadequate preparedness for end-of-life care planning. The proposed
study will measure feasibility, acceptability, and impact of a Supportive Care intervention.
Idiopathic Pulmonary Fibrosis (IPF) is a disease of aging associated with intense medical and
financial burden and expected to grow in incidence within the US population. Median survival
from diagnosis is 3.8 years, although some patients succumb to a rapid death within 6 months.
New therapies have recently become available. While these medications slow the rate of
pulmonary deterioration, they have no impact on ultimate survival or quality of life.
Although transplantation is an effective surgical therapy, less than 20% of patients ever
receive a lung transplant. The remaining 80% have few treatment options and a likely rapidly
progressive downhill course. Despite the fatal prognosis, we have found that patients and
caregivers often fail to understand the poor prognosis as the disease relentlessly
progresses. At the end of life, IPF patients and their caregivers experience stress, symptom
burden, poor quality of life, and inadequate preparedness for end-of-life care planning.
The proposed study will measure feasibility, acceptability, and impact of a Supportive Care
intervention. Patients with IPF and their caregivers will be randomized to receive this
intervention or usual care. The intervention will include information about the disease,
self-management strategies, and introduction to advanced care planning in a format with
enhanced content available across multiple domains (face-to-face, printed material, digital
(tablet) delivered by an interventionist. The usual care group will be provided with routine
printed patient education.
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