Integrating Palliative Care for Patients With Idiopathic Pulmonary Fibrosis and Their Caregivers
| Status: | Recruiting |
|---|---|
| Conditions: | Pulmonary |
| Therapuetic Areas: | Pulmonary / Respiratory Diseases |
| Healthy: | No |
| Age Range: | 45 - Any |
| Updated: | 11/22/2018 |
| Start Date: | March 23, 2017 |
| End Date: | July 31, 2019 |
| Contact: | Melinda J Klesen, BA |
| Email: | klesenmj@upmc.edu |
| Phone: | 412-802-6860 |
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.
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.
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.
Inclusion Criteria:
- 45 years or older
- Primary Diagnosis of with Idiopathic Pulmonary Fibrosis (IPF)
- Has a caregiver, 18 years or older (spouse/partner/child/family member/friend),
willing to participate.
- Sees a Simmons Center Physician for usual IPF care.
Exclusion Criteria:
- less than 45 years
- Not diagnosed with IPF
- Has an unwilling caregiver, or a caregiver under 18.
- Does not see a Simmons Center Physician for usual IPF care.
We found this trial at
1
site
Pittsburgh, Pennsylvania 15213
Phone: 412-802-6860
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