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).
For Berner Reha Zentrum only: Diagnosis of a FILD as major indication for pulmonary rehabilitation
For Inselspital only: Enrolled in Idiopathic interstitial Pneumonia (IIP) cohort study (Nr. 246/15 / PB_2016-01524) and agreed to further use of data for further research purpose
Age ≥ 18 years
Written informed consent
Cognitive inability or insufficient knowledge of project language (German) to follow informed consent or study procedures
Sarcoidosis
Patients with fibrotic lung disease participating in an inpatient rehabilitation or in outpatient consultations for interstitial lung disease
Cohort
Prospective
Inpatient rehabilitation (BRZ) or regular outpatient consultations (Insel)
Other interventionPatients recruited at the Berner Reha Zentrum recieve standard inpatient pulmonary rehabilitation programme for patients with fibrotic ILD, including supervised exercise training, education and multidisciplinary care as part of routine clinical practice. Patients recruitet at the Inselspital Bern recieve regular outpatient fILD consultations every three to six months as part of routine clinical practice.
Blended patient education and self-management programme (PESM)
BehavioralThe web-based digital programme consists of multiple e-learning modules covering the core and subtopics identified with the preceding Delphi study. \*\*Intervention for inpatient rehabilitation patients:\*\* Patients will be free to schedule and go through the e-learning modules during the course of the rehabilitation. During the usual care therapy sessions, patients will have the opportunity to discuss topics and questions regarding the content of the digital program face-to-face with a physiotherapist in order to clarify questions. Patients will retain access to the e-learning resources after rehabilitation for self-management support. \*\*Intervention for outpatient care:\*\* Patients will receive access to the learning platform during their initial ILD consultation and will be free to schedule and go through the e-learning modules and discuss topics and questions during their next consultation appointment with the ILD nurse.
Change in Self-efficacy
Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE) tool
Change in Self-efficacy
Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE) tool
Change in health related quality of life
King's Brief Interstitial Lung Disease (K-BILD) health status questionnaire,
Change in functional status
King's Brief Interstitial Lung Disease (K-BILD) health status questionnaire,
Change in self-reported health status
EQ-VAS Score \[0 -100\] (worst to best health status)
Intervention acceptability
Acceptability of the PESM intervention assessed using the Acceptability of Intervention Measure (AIM).
Intervention appropriateness
Appropriateness of the PESM intervention assessed using the Intervention Appropriateness Measure (IAM)
Intervention feasibility
Feasibility of the PESM intervention assessed using the Feasibility of Intervention Measure (FIM).
Intervention compliance
Compliance with the intervention programme, measured as percentage of attended/performed educational modules
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Berner Reha Zentrum AG
Lead sponsor
Insel Gruppe AG, University Hospital Bern
Collaborator
Zurich University of Applied Sciences
Collaborator
University of Zurich
Collaborator
