Rationale: There is no standardized education program for patients with interstitial lung disease (ILD). Pulmonary rehabilitation is a resource for structured disease education that is still geared primarily toward patients with chronic obstructive pulmonary disease.
Objectives: The goals of this qualitative study were to identify the educational needs of patients with ILD and explore how pulmonary rehabilitation can become an appropriate setting for ILD education.
Methods: Four focus groups including 24 patients with ILD and 10 semistructured interviews with healthcare professionals with expertise in ILD and/or pulmonary rehabilitation were conducted in two academic centers (University of California San Francisco and Centre Hospitalier de l'Université de Montréal). We conducted a qualitative thematic analysis of the transcripts using an iteratively developed codebook.
Measurements and main results: The transcript analysis highlighted four major themes: patient dissatisfaction with the current educational model, lack of attention to emotional well-being, specific recommendations for educational content, and operationalizing education in the context of pulmonary rehabilitation. Seven key topics to be included an ILD-specific, pulmonary rehabilitation-based education program were identified: disease education, symptom management, clinical tests, autonomy, oxygen use, medications, and end-of-life counseling.
Conclusions: This study provides a better understanding of the needs of patients and healthcare providers regarding education of patients with ILD. It lays the foundation for the development of a structured education intervention that could be delivered in the context of pulmonary rehabilitation.
Keywords: education; interstitial lung disease; patient knowledge; pulmonary rehabilitation.