Patient and Partner *Empowerment* Protocol in Idiopathic Pulmonary Fibrosis
- Conditions
- Idiopathic Pulmonary Fibrosisscarring of the lung10024967
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 48
For patients only:
- Diagnosis of IPF according to the guidelines of 2011
-Forced Vital Capacity (FVC) >=45% from predicted, and if available diffusion capacity for carbon monoxide (DLCO) >= 25% from predicted;For patients and partners (a partner is defined as a marital partner, family member or other close contact):
-Willing and able to attend three afternoons in the outpatient clinic and to complete questionnaires.
-Able to speak, read and write in Dutch
-Written informed consent
For patients only:
- Estimated life expectancy less than 1 year;For patients and partners (a partner is defined as a marital partner, family member or other close contact)
- Unable to provide informed consent
- History of severe psychiatric disease
- If consent for hair sampling is given: use of steroids (systemic, inhalation, intra articular etc. ) in the past year.
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method <p>To evaluate the effect of a short educational program for patients with IPF and<br /><br>their partners on quality of life measured with K-BILD. </p><br>
- Secondary Outcome Measures
Name Time Method <p>-to explore if hair cortisol values change before and after the program<br /><br>-to explore if changes in perceived stress and anxiety measured with<br /><br>questionnaires correlate with hair cortisol values<br /><br>-to explore if outcomes of the questionnaires focusing on quality of life,<br /><br>health status, anxiety and depression and stress change before and after the<br /><br>program.<br /><br>-to assess if there is there a learning effect evaluated by IPF specific<br /><br>questions. </p><br>