The Unmet Educational Needs of Patients with Interstitial Lung Disease. Setting the Stage for Tailored Pulmonary Rehabilitation

Abstract

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.

Figures

Figure 1.

How pulmonary rehabilitation can enrich the available sources of education for patients with interstitial lung disease (ILD). An education program included within pulmonary rehabilitation should be built on a strong foundation of appropriately tailored topics and adequate session format. This proposed framework could address unmet educational needs and contribute to comprehensive care of the patient with ILD.