Self-efficacy and Well-being of Patients With Fibrotic Interstitial Lung Disease - an Observational Study

Fibrotic interstitial lung diseases (FILD) are a group of rare and chronic lung conditions that are often associated with persistent symptoms, reduced quality of life, and limitations in daily activities. People living with FILD frequently report unmet needs regarding disease-specific education and support for self-management. In particular, patients identify a lack of clear, understandable, and patient-centered educational resources as a major gap in current inpatient rehabilitation and outpatient interstitial lung disease (ILD) care.

To address this need, a blended digital education and self-management program was developed for patients with FILD. The program combines web-based e-learning modules with opportunities for discussion and clarification with healthcare professionals during routine inpatient rehabilitation or outpatient clinical care. The digital content addresses core and optional topics related to disease understanding, symptom management, and self-management strategies. Suggested modules are based on individual patient needs and preferences identified through initial questions within the digital platform, while all modules remain accessible to all users.

This study is an exploratory, multicenter, before-after observational cohort study with an embedded feasibility sub-study. Two cohorts are included: a historical control cohort consisting of patients treated before implementation of the digital program, and a feasibility cohort consisting of patients treated after implementation who consent to participate and receive access to the digital education and self-management program. Participants are not randomized, and investigators do not assign patients to intervention or control groups. Exposure to the program is determined by timing of implementation and patient consent.

The primary objective of the feasibility sub-study is to assess intervention feasibility, including acceptability, perceived usefulness, patient satisfaction, and adherence to the digital program. Adherence is assessed by documenting participation in and completion of the educational modules. Semi-structured interviews with patients and healthcare professionals are conducted to explore barriers and facilitators to implementation in inpatient rehabilitation and outpatient care settings.

Secondary objectives address study feasibility for a future larger effectiveness trial. These objectives include evaluating the feasibility of recruiting the targeted number of participants, retaining participants through follow-up assessments, and collecting health-related outcome data with minimal missing data.