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| Name | Class |
|---|---|
| Insel Gruppe AG, University Hospital Bern | OTHER |
| Zurich University of Applied Sciences | OTHER |
| University of Zurich | OTHER |
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Patients with fibrotic insterstitial lung disease (ILD) participating in inpatient rehabilitation or in outpatient pulmonary care will be invited to participate in this observational study. Patients will fill out questionnaire regarding quality of life and symptoms at baseline and follow-up (at the end of rehabilitation or after the second outpatient ILD consultation). Additionally, clinical data obtained in clinical routine or for the IIP registry will be used for this project.
The aim is to assess changes in self-efficacy and quality of life over time and to establish a control cohort for a later feasibility study on a educational and self-management intervention (currently in planning).
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| inpatient rehabilitation | Behavioral | This is an uncontrolled observational study on patients undergoing usual care in pulmonary rehabilitation and care |
|
| Measure | Description | Time Frame |
|---|---|---|
| Change in Self-efficacy | Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE) tool | From t0 to t2 (60-120 days after t0) |
| Measure | Description | Time Frame |
|---|---|---|
| Change in Self-efficacy | Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE) tool | From t0 to t1 (14-40 days after t0) |
| Change in health related quality of life | King's Brief Interstitial Lung Disease (K-BILD) health status questionnaire, |
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Inclusion criteria are:
Exclusion criteria are:
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Patients with fibrotic lung disease participating in an inpatient rehabilitation or in outpatient consultations for interstitial lung disease
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Thimo Marcin, PhD | Contact | +41 33 244 30 48 | t.marcin@rehabern.ch | |
| Thomas Riegler, Msc | Contact | riel@zhaw.ch |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Berner Reha Zentrum, Rehabilitation & Sports Medicine, Insel Group, University Hospital Berne | Recruiting | Bern | Heiligenschwendi | 3365 | Switzerland |
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| ID | Term |
|---|---|
| D017563 | Lung Diseases, Interstitial |
| ID | Term |
|---|---|
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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| From t0 to t1 (14-40 days after t0) and from t0 to t2 (60-120 days after t0) |
| Change in functional status | King's Brief Interstitial Lung Disease (K-BILD) health status questionnaire, | From t0 to t1 (14-40 days after t0) and from t0 to t2 (60-120 days after t0) |
| Change in self-reported health status | EQ-VAS Score [0 -100] (worst to best health status) | From t0 to t1 (14-40 days after t0) and from t0 to t2 (60-120 days after t0) |
| Change in self-reported symptoms | Leicester Cough Questionnaire | From t0 to t1 (14-40 days after t0) and from t0 to t2 (60-120 days after t0) |
| Change in self-reported anxiety and depression | Hospital Anxiety and Depression Scale [0-21] (high number indicates high symptoms) | From t0 to t1 (14-40 days after t0) and from t0 to t2 (60-120 days after t0) |
| Symptom Visual Analog Scales | Visual Analog Scales [0-100] for Cough, Dyspnoea, Fatigute, Emotions to self-report severity, impairement and self-efficacy in symptom management. (100 means high severity, high impairment and high self-efficacy) | From t0 to t1 (14-40 days after t0) and from t0 to t2 (60-120 days after t0) |
| Supplemental oxygen needs for activity and at rest | routinely collected data | t0, t1 (14-40 days after t0) and t2 (60-120 days after t0) |
| Re-hospitalization and survival | routinely collected data | from t0 to t2 (60-120 days after t0) |
| Department of Pulmonary Medicine, Inselspital, Bern University Hospital, University of Bern | Recruiting | Bern | 3010 | Switzerland |
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