Background: Performance benchmarks for the management of idiopathic pulmonary fibrosis (IPF) have not been established. We used data from the IPF-PRO Registry, an observational registry of patients with IPF managed at sites across the US, to examine associations between the characteristics of the enrolling sites and patient outcomes. Methods: An online survey was used to collect information on the resources, operations, and self-assessment practices of IPF-PRO Registry sites that enrolled ≥ 10 patients. Site variability in 1-year event rates of clinically relevant outcomes, including death, death or lung transplant, and hospitalization, was assessed. Models were adjusted for differences in patient case mix by adjusting for known predictors of each outcome. We assessed whether site-level heterogeneity existed for each patient-level outcome, and if so, we investigated potential drivers of the heterogeneity. Results: All 27 sites that enrolled ≥ 10 patients returned the questionnaire. Most sites were actively following > 100 patients with IPF (70.4%), had a lung transplant program (66.7%), and had a dedicated ILD nurse leader (77.8%). Substantial heterogeneity was observed in the event rates of clinically relevant outcomes across the sites. After controlling for patient case mix, there were no outcomes for which the site variance component was significantly different from 0, but the p-value for hospitalization was 0.052. Starting/completing an ILD-related quality improvement project in the previous 2 years was associated with a lower risk of hospitalization (HR 0.60 [95% CI 0.44, 0.82]; p = 0.001). Conclusions: Analyses of data from patients with IPF managed at sites across the US found no site-specific characteristics or practices that were significantly associated with clinically relevant outcomes after adjusting for patient case mix. Trial registration ClinicalTrials.gov, NCT01915511. Registered 5 August 2013, https://clinicaltrials.gov/ct2/show/NCT01915511.
Bibliographical noteFunding Information:
The IPF-PRO/ILD-PRO™ Registry is funded by Boehringer Ingelheim Pharmaceuticals, Inc. (BIPI) and co-ordinated by the Duke Clinical Research Institute (DCRI).
The authors meet criteria for authorship as recommended by the International Committee of Medical Journal Editors (ICMJE). The authors did not receive payment for development of this article. Writing support was provided by Julie Fleming and Wendy Morris of Fleishman-Hillard, London, UK, which was contracted and funded by BIPI. Boehringer Ingelheim (BI) was given the opportunity to review the article for medical and scientific accuracy as well as intellectual property considerations.
We thank the principal investigators and enrolling centers in the IPF-PRO Registry: Albert Baker, Lynchburg Pulmonary Associates, Lynchburg, VA; Scott Beegle, Albany Medical Center, Albany, NY; John A. Belperio, University of California Los Angeles, Los Angeles, CA; Rany Condos, NYU Medical Center, New York, NY; Francis Cordova, Temple University, Philadelphia, PA; Daniel A. Culver, Cleveland Clinic, Cleveland, OH; Daniel Dilling, Loyola University Health System, Maywood, IL; John Fitzgerald (formerly Leann Silhan), UT Southwestern Medical Center, Dallas, TX; Kevin R. Flaherty, University of Michigan, Ann Arbor, MI; Kevin Gibson, University of Pittsburgh, Pittsburgh, PA; Mridu Gulati, Yale School of Medicine, New Haven, CT; Kalpalatha Guntupalli, Baylor College of Medicine, Houston, TX; Nishant Gupta, University of Cincinnati Medical Center, Cincinnati, OH; Amy Hajari Case, Piedmont Healthcare, Atlanta, GA; David Hotchkin, The Oregon Clinic, Portland, OR; Tristan J. Huie, National Jewish Health, Denver, CO; Robert J. Kaner, Weill Cornell Medical College, New York, NY; Hyun J. Kim, University of Minnesota, Minneapolis, MN; Lisa H. Lancaster (formerly Mark Steele), Vanderbilt University Medical Center, Nashville, TN; Joseph A. Lasky, Tulane University, New Orleans, LA; Doug Lee, Wilmington Health and PMG Research, Wilmington, NC; Timothy Liesching, Lahey Clinic, Burlington, MA; Randolph Lipchik, Froedtert & The Medical College of Wisconsin Community Physicians, Milwaukee, WI; Jason Lobo, UNC Chapel Hill, Chapel Hill, NC; Tracy R. Luckhardt (formerly Joao A. de Andrade), University of Alabama at Birmingham, Birmingham, AL; Yolanda Mageto (formerly Howard Huang), Baylor University Medical Center at Dallas, Dallas, TX; Prema Menon (formerly Yolanda Mageto), Vermont Lung Center, Colchester, VT; Lake Morrison, Duke University Medical Center, Durham, NC; Andrew Namen, Wake Forest University, Winston Salem, NC; Justin M. Oldham, University of California, Davis, Sacramento, CA; Tessy Paul, University of Virginia, Charlottesville, VA; David Zhang (formerly Anna Podolanczuk, David Lederer, Nina M. Patel), Columbia University Medical Center/New York Presbyterian Hospital, New York, NY; Mary Porteous (formerly Maryl Kreider), University of Pennsylvania, Philadelphia, PA; Rishi Raj (formerly Paul Mohabir), Stanford University, Stanford, CA; Murali Ramaswamy, PulmonIx LLC, Greensboro, NC; Tonya Russell, Washington University, St. Louis, MO; Paul Sachs, Pulmonary Associates of Stamford, Stamford, CT; Zeenat Safdar, Houston Methodist Lung Center, Houston, TX; Shirin Shafazand (formerly Marilyn Glassberg), University of Miami, Miami, FL; Ather Siddiqi (formerly Wael Asi), Renovatio Clinical, The Woodlands, TX; Barry Sigal, Salem Chest and Southeastern Clinical Research Center, Winston Salem, NC; Mary E. Strek (formerly Imre Noth), University of Chicago, Chicago, IL; Sally Suliman, (formerly Jesse Roman), University of Louisville, Louisville, KY; Jeremy Tabak, South Miami Hospital, South Miami, FL; Rajat Walia, St. Joseph’s Hospital, Phoenix, AZ; Timothy P. M. Whelan, Medical University of South Carolina, Charleston, SC. The authors meet criteria for authorship as recommended by the International Committee of Medical Journal Editors (ICMJE). The authors did not receive payment for development of this article. Writing support was provided by Julie Fleming and Wendy Morris of Fleishman-Hillard, London, UK, which was contracted and funded by BIPI. Boehringer Ingelheim (BI) was given the opportunity to review the article for medical and scientific accuracy as well as intellectual property considerations.
© 2022, The Author(s).
- Health resources
- Interstitial lung disease
- Pulmonary fibrosis
- Tertiary healthcare
PubMed: MeSH publication types
- Journal Article
- Multicenter Study
- Observational Study