title: The Unmet Educational Needs of Patients with Interstitial Lung Disease. Setting the Stage for Tailored Pulmonary Rehabilitation.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: 1 Department of Medicine, University of California San Francisco, San Francisco, California.|2 Département de Médecine, Centre Hospitalier de l'Université de Montréal, Montréal, Québec, Canada.
authors.forename: Julie
authors.initials: J
authors.lastname: Morisset
authors.affiliation: 2 Département de Médecine, Centre Hospitalier de l'Université de Montréal, Montréal, Québec, Canada.
authors.forename: Bruno-Pierre
authors.initials: BP
authors.lastname: Dubé
authors.affiliation: 1 Department of Medicine, University of California San Francisco, San Francisco, California.
authors.forename: Chris
authors.initials: C
authors.lastname: Garvey
authors.affiliation: 3 Research Institute of the McGill University Health Centre, Respiratory Epidemiology and Clinical Research Unit, Montreal, Quebec, Canada.
authors.forename: Jean
authors.initials: J
authors.lastname: Bourbeau
authors.affiliation: 1 Department of Medicine, University of California San Francisco, San Francisco, California.
authors.forename: Harold R
authors.initials: HR
authors.lastname: Collard
authors.affiliation: 4 Department of Medicine, National Jewish Health, Denver, Colorado; and.
authors.forename: Jeffrey J
authors.initials: JJ
authors.lastname: Swigris
authors.affiliation: 5 Department of Medicine, University of Colorado Denver, Aurora, Colorado.
authors.forename: Joyce S
authors.initials: JS
authors.lastname: Lee
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003376:Counseling; D005260:Female; D017144:Focus Groups; D006801:Humans; D007407:Interviews as Topic; D017563:Lung Diseases, Interstitial / Q000534:rehabilitation*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D036301:Qualitative Research; D014481:United States
keywords: education; interstitial lung disease; patient knowledge; pulmonary rehabilitation