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).
Study Type
OBSERVATIONAL
Enrollment
80
This is an uncontrolled observational study on patients undergoing usual care in pulmonary rehabilitation and care
Berner Reha Zentrum, Rehabilitation & Sports Medicine, Insel Group, University Hospital Berne
Bern, Heiligenschwendi, Switzerland
RECRUITINGDepartment of Pulmonary Medicine, Inselspital, Bern University Hospital, University of Bern
Bern, Switzerland
RECRUITINGChange in Self-efficacy
Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE) tool
Time frame: From t0 to t2 (60-120 days after t0)
Change in Self-efficacy
Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE) tool
Time frame: 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,
Time frame: 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,
Time frame: 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)
Time frame: 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
Time frame: 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)
Time frame: 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)
Time frame: 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
Time frame: t0, t1 (14-40 days after t0) and t2 (60-120 days after t0)
Re-hospitalization and survival
routinely collected data
Time frame: from t0 to t2 (60-120 days after t0)
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