Idiopathic Pulmonary Fibrosis scarring of the lung
Conditions
Interventions
Support program for patients with IPF and their partners.
Sponsors
Erasmus MC, Universitair Medisch Centrum Rotterdam
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: 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
Exclusion criteria
Exclusion criteria: 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.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| To evaluate the effect of a short educational program for patients with IPF and their partners on quality of life measured with K-BILD. | — |
Secondary
| Measure | Time frame |
|---|---|
| -to explore if hair cortisol values change before and after the program -to explore if changes in perceived stress and anxiety measured with questionnaires correlate with hair cortisol values -to explore if outcomes of the questionnaires focusing on quality of life, health status, anxiety and depression and stress change before and after the program. -to assess if there is there a learning effect evaluated by IPF specific questions. | — |
Countries
Netherlands
Outcome results
None listed