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What Do Patients with IPF Want in Pulmonary Rehab Education?


Pulmonary rehabilitation (PR) is the cornerstone of management of individuals with chronic respiratory diseases and has been shown to improve symptoms, exercise tolerance, and quality of life in patients with a variety of respiratory diseases including interstitial lung disease (ILD).1 Based on data from 2 controlled trials of PR in IPF, the 2011 ATS/ERS/JRS/ALAT IPF guidelines recommend that the majority of patients with IPF should be treated with PR.2 PR programs consist of aerobic conditioning, strength and flexibility training, educational lectures, nutritional interventions, and psychosocial support.2 Of concern is the fact that the educational content of PR was developed for patients with chronic obstructive pulmonary disease (COPD) and covers topics that may not be applicable to patients with IPF, as the conditions are dissimilar in terms of the physiological basis of exercise imitations, symptoms, treatment, disease progression, and outcomes.3 In order to address this issue, Holland, Fiore, Goh, Symons, et al queried patients and clinicians to determine the educational topics that should be included in PR programs for patients with ILD.3

What They Did

The authors conducted individual semistructured interviews with 18 patients with ILD, 9 of whom had IPF, and 14 clinicians who treat patients with ILD.3 Questions focused on the educational needs of people with ILD and drew upon a previous appraisal of PR information needs for patients with COPD along with suggested ILD education topics in a published expert review.

What They Found

Most patients with IPF understood the serious and progressive nature of their condition.3 Across the patient interviews, the strongest theme was the wish for PR clinicians to be honest about their prognosis and provide information about what to expect over the course of the disease. In addition, patients indicated a desire for information on end-of-life planning and felt comfortable addressing the topic in a group setting. Most patients indicated a willingness to attend standard PR education sessions but desired ILD-specific content. For example, patients noted that they would like information on managing cough, how to manage medications and their side effects, and strategies to limit disease progression.

Among clinicians, management of cough and use of oxygen therapy were topics consistently acknowledged as critical components of ILD education. Additionally, most clinicians noted that patients needed to understand the types of treatments available, including the role of clinical trials. There was disagreement among clinicians regarding whether prognosis and advanced care planning should be discussed in PR. Some felt that discussion of these topics should be handled by the treating physician and/or that the topics were not appropriate for a group setting.

What It Means

Patients with ILD have specific educational needs that are not currently addressed in standard PR education programs.3 Although this study identified several topics of importance to patients and clinicians, there was a lack of consensus between the 2 groups, indicating the need for additional work to develop relevant and acceptable educational PR content for patients with ILD.

Link to Abstract: http://www.ncbi.nlm.nih.gov/pubmed/25687210


  1. Spruit MA, Singh SJ, Garvey C et al. An official American Thoracic Society/European Respiratory Society statement: key concepts and advances in pulmonary rehabilitation. Am J Respir Crit Care Med 2013;188(8):e13-e64.
  2. Raghu G, Collard HR, Egan JJ et al. An official ATS/ERS/JRS/ALAT statement: idiopathic pulmonary fibrosis: evidence-based guidelines for diagnosis and management. Am J Respir Crit Care Med 2011;183(6):788-824.
  3. Holland AE, Fiore JF, Jr, Goh N et al. Be honest and help me prepare for the future: What people with interstitial lung disease want from education in pulmonary rehabilitation. Chron Respir Dis 2015;12(2):93-101.