Idiopathic pulmonary fibrosis (IPF) is the most common and lethal of the idiopathic interstitial pneumonias. Although rare enough to be considered an orphan disease, the annual incidence of IPF is 94 cases per 100,000 person-years.1 IPF accounts for 15,000 to 40,000 deaths per year in the United States—and the incidence and mortality of IPF are increasing.1-3 The disease is characterized by an insidious onset and progressive decline in lung function because of fibrosis of the lung parenchyma. Despite the recent approvals of two new drugs, each shown to slow the decline in lung function, there is no therapeutic cure for IPF.4 The only treatment shown to improve survival is lung transplantation.5 Indeed, the prognosis of IPF is poor, with median survival estimates of 3.8 years or less.1
An international coalition of societies, including the American Thoracic Society, published comprehensive guidelines for the diagnosis and management of pulmonary fibrosis in 2011 and subsequently revised eight treatment recommendations in 2015.4,5 Despite the availability of these evidence-based guidelines, significant gaps in the care of patients with IPF remain. These gaps include delayed or inaccurate diagnosis, delayed referral to specialty care, limited use of recommended multidisciplinary (interprofessional) care, variable approaches to management, and poor patient-provider communication.6
The Pulmonary Fibrosis Foundation (PFF), founded in 2000, established the Care Center Network (CCN) as its central effort to improve and standardize medical care in pulmonary fibrosis. As of December 2017, the PFF CCN includes 45 centers in 27 states. The PFF CCN has the potential to improve patient outcomes by sharing local expertise and clinical excellence in IPF diagnosis and disease management with other CCN sites and community clinicians. In practice, the CCN sites face diverse challenges, and recent discussion of these issues by stakeholders demonstrated the clear need for a consistent “top-down” strategy that incorporates current standards of practice and can be extended to all centers.7 Thus, one of the PFF’s CCN goals is to bring together the collective resources of centers and facilitate intercenter communication to establish current standards of practice in the management of interstitial lung disease (ILD).7
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Idiopathic pulmonary fibrosis is a progressive interstitial lung disease with poor prognosis and no cure. Despite the availability of evidence-based guidelines, significant gaps in care remain, including delayed or inaccurate diagnosis, delayed referral to specialty care, limited use of recommended multidisciplinary (interprofessional) care, variable approaches to management, and poor patient-provider communication. The Pulmonary Fibrosis Foundation Care Center Network has the potential to improve patient outcomes by sharing local expertise and clinical excellence in idiopathic pulmonary fibrosis diagnosis and disease management with other care center network sites and community clinicians.
Thus, one of its goals is to bring together the collective resources of centers and facilitate intercenter communication to establish current standards of practice. This monograph reflects interviews with personnel at five Pulmonary Fibrosis Foundation Care Center Network sites who provided self-reflection on what they do well in the care of their patients with pulmonary fibrosis.
- Identify strategies to standardize the clinical management of patients with idiopathic pulmonary fibrosis
- Describe strategies to increase patient education within the existing workflow of idiopathic pulmonary fibrosis patient management
- Describe strategies to improve interprofessional collaboration related to the management of idiopathic pulmonary fibrosis
Disclosure of Conflicts of Interest
The Postgraduate Institute for Medicine (PIM) requires instructors, planners, managers, and other individuals who are in a position to control the content of this activity to disclose any real or apparent conflict of interest (COI) they may have as related to the content of this activity. All identified COIs are thoroughly vetted and resolved according to PIM policy. PIM is committed to providing its learners with high-quality CME/CE activities and related materials that promote improvements or quality in healthcare and not a specific proprietary business interest of a commercial interest.
The planning staff and content managers hereby state that they or their spouse/life partner do not have any financial relationships or relationships to products or devices with any commercial interest related to the content of this activity of any amount during the past 12 months.
Global Academy for Medical Education Staff: Sylvia H. Reitman, MBA, DipEd; Mike LoPresti; Shirley V. Jones, MBA; Ron Schaumburg; and Stephanie Breslan, MS; hereby state that they or their spouse/life partner do not have any financial relationships or relationships to products or devices with any commercial interest related to the content of this activity of any amount during the past 12 months.
Postgraduate Institute for Medicine: The following planners and managers, Trace Hutchison, PharmD; Samantha Mattiucci, PharmD, CHCP; Judi Smelker-Mitchek, MBA, MSN, RN; and Jan Schultz, MSN, RN, CHCP; have nothing to disclose.
Disclosure of Unlabeled Use
This educational activity may contain discussion of published and/or investigational uses of agents that are not indicated by the FDA. The planners of this activity do not recommend the use of any agent outside of the labeled indications.
The opinions expressed in this educational activity are those of the faculty and do not necessarily represent the views of the planners. Please refer to the official prescribing information for each product for discussion of approved indications, contraindications, and warnings.
Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any procedures, medications, or other courses of diagnosis or treatment discussed or suggested in this activity should not be used by clinicians without evaluation of their patients' conditions and possible contraindications and/or dangers in use, review of any applicable manufacturer’s product information, and comparison with recommendations of other authorities.
1. Raghu G, Chen S-Y, Yeh W-S, et al. Idiopathic pulmonary fibrosis in US Medicare beneficiaries aged 65 years and older: Incidence, prevalence, and survival, 2001–11. Lancet Respir Med. 2014;2(7):566-572. doi:10.1016/ S2213-2600(14)70101-8.
2. Hutchinson JP, McKeever TM, Fogarty AW, Navaratnam V, Hubbard RB. Increasing global mortality from idiopathic pulmonary fibrosis in the twenty-first century. Ann Am Thorac Soc. 2014;11(8):1176-1185. doi:10.1513/ AnnalsATS.201404-145OC.
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10. Pulmonary Fibrosis Foundation. The Facts: PFF Care Center Network and PFF Patient Registry. http://www.pulmonaryfibrosis.org/docs/default-source/news-documents/pulmonaryfibrosisfoundation_pffregistryfactsheet.pdf?sfvrsn=0. Accessed October 20, 2017.
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This continuing education supplement was developed from interviews with interstitial lung disease (ILD) centers, both in the Pulmonary Fibrosis Foundation Care Center Network and those outside of it. It is part of a three-phase curriculum, IPF Education for ILD Centers and Their Communities: Applying Behavior Change Theory to Facilitate and Measure Adoption of Current Standards of Practice Across Individuals and Systems in IPF. The supplement content brings together data from a patient survey and a previous CME/CE activity in this curriculum, “Practice Self-Assessment for Diagnosis and Management of Idiopathic Pulmonary Fibrosis (IPF),” found at: https://tinyurl.com/IPFAssess17, both of which were used to develop the interview questions for the interstitial lung disease centers.
This supplement was written by a team at Global Academy for Medical Education, LLC, Pro-Change Behavior Systems, and Stephanie Breslan, MS, medical writer.
Neither the editors of CHEST Physician nor the Editorial Advisory Board nor the reporting staff contributed to its content. The ideas and opinions expressed are those of the faculty and do not necessarily reflect the views of the supporters, Global Academy for Medical Education, LLC, Postgraduate Institute for Medicine, or the Publisher.
Copyright © 2017 by Global Academy for Medical Education, LLC, Frontline Medical Communications Inc., and its Licensors. All rights reserved. No part of this publication may be reproduced or transmitted in any form, by any means, without prior written permission of the Publisher. Global Academy for Medical Education, LLC, will not assume responsibility for damages, loss, or claims of any kind arising from or related to the information contained in this publication, including any claims related to the products, drugs, or services mentioned herein.