The goal of this observational study is to evaluate the feasibility and acceptability of a newly developed digital education and self-management program for people with fibrotic interstitial lung diseases (FILD) during inpatient pulmonary rehabilitation and outpatient interstitial lung disease (ILD) care. The study also explores whether participation in the program is associated with changes in health-related outcomes.
The main questions this study aims to answer are:
* Is the digital education and self-management program acceptable, useful, and practical for patients with FILD? * Is it feasible to recruit and retain patients and to collect outcome data for a future larger effectiveness study? * Do patients who participate in the program show differences in health-related outcomes compared with patients treated before the program was implemented?
Patients who consent to participate during the implementation phase will be offered access to the digital education and self-management program. Their outcomes will be compared with those of a historical cohort of patients who received usual care before the program was introduced.
Participants will:
* Use a web-based digital education and self-management program with multiple e-learning modules tailored to individual needs and preferences * Access the program via smartphone, tablet, or computer during inpatient rehabilitation or outpatient care * Discuss questions related to the program content with healthcare professionals during routine rehabilitation sessions or clinic visits * Complete questionnaires about their experience with the program and their health-related outcomes
Diagnosis of a FILD as major indication for pulmonary rehabilitation (for Berner Reha Zentrum 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 (for Inselspital only)
Age ≥ 18 years
Written informed consent
Cognitive inability or insufficient knowledge of project language (German) to follow informed consent or study procedures
Sarcoidosis
Single group
Blended patient education and self-management programme
BehavioralThe program consists of multiple web-based e-learning modules covering core and optional topics relevant to lung fibrosis. Modules are suggested based on individual symptoms and self-management needs, but all content is accessible to all users. The program can be accessed via smartphone, tablet, or computer using a web link. It is intended solely for education and well-being support and is not used for diagnosis, monitoring, treatment, or prognosis of disease. In inpatient rehabilitation, patients may use the program flexibly during their stay, with support from therapists as needed, and can discuss content during routine therapy sessions. In outpatient care, patients receive access during an ILD clinic visit and can discuss content during follow-up appointments, supported by reminders to encourage use.
Intervention feasibility outcomes - Acceptance
Acceptability of Intervention Measure (AIM): 4-item questioniare measuring the acceptability of an intervention on a 5-likert scale (completely disagree to completely agree).
Intervention feasibility outcomes - Appropriateness
Intervention Appropriateness Measure (IAM): 4-item questioniare measuring the appropriation of an intervention on a 5-likert scale (completely disagree to completely agree).
Intervention feasibility outcomes - Feasibiilty
Feasibility of Intervention Measure (FIM): 4-item questioniare measuring the acceptability of an intervention on a f-likert scale (completely disagree to completely agree).
Intervention feasibility outcomes - Compliance
percent of attended/performed educational modules.
Study feasibility outcomes - Recruitment success
Recruitment success: Time to assess the targeted the 50 patients for the feasibility study.
Study feasibility outcomes - Retention
Number of recruited patients that successfully completed the study (pre- and post-assessment)
Study feasibility outcomes - Data collection:
Percentage of missing data in outcome assessments.
Health related outcomes - self efficacy
Change in self-efficacy from t0 to t1 and t2, assessed with the Pulmonary Rehabilitation Adapted Index of Self-Efficacy
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Insel Gruppe AG, University Hospital Bern
Lead sponsor
University of Zurich
Collaborator
ZHAW School of Health Professions, Institute of Physiotherapy
Collaborator
