Pulmonary Fibrosis Foundation Research Explores Quality and Access to Patient Care

Newswise — (CHICAGO) May 16, 2022 – The Pulmonary Fibrosis Foundation (PFF), the nation’s leading pulmonary fibrosis research education and advocacy organization, announced research results from four studies examining access to care and outcomes for patients living with pulmonary fibrosis (PF) and interstitial lung disease (ILD).

“Research is a top priority for the PFF, and we are pleased that investigators and providers are using the Registry and other PFF resources to shed light on the many complex and debilitating presentations of PF,” said William T. Schmidt, President, and CEO of the PFF.

The research — which investigated urban and rural differences among patients, hospitalization rates based on ILD type, access to palliative care services and patient outcomes across the PFF Care Center Network — will be presented at the American Thoracic Society International Conference 2022 (ATS), May 13-18, in San Francisco.

Four of the studies used data from the PFF Patient Registry, an observational database established in 2016 that follows more than 2,000 patients with ILD at PFF Care Center Network (CCN) sites.

The studies include —

Poster #11457: Differences in Patient Outcomes Across the PFF Care Center Network

  • J.S. Lee, R. Boente, E. White, C. Baxter, J. E. Shore, H. R. Collard
  • Poster Discussion Session B22 – Emerging Management of Fibrotic ILDs
  • Monday, May 16, 9:30-11 a.m.
  • Summary: Using PFF Patient Registry data, this study suggests that site-level variation exists with respect to key clinical outcomes for patients with ILD managed at PFF CCN sites. This research supports further investigation to identify practice patterns and resources that are associated with improved patient outcomes.

Poster #8147: Hospitalization Rates in Various Interstitial Lung Diseases: An Analysis of the Pulmonary Fibrosis Foundation (PFF) Patient Registry

  • C.S. King, R. V. Ignacio, E. Freiheit, S. Arya, V. Khangoora, A. L. Singhal, A. Nyquist, A. Brown, O. A. Shlobin, K. R. Flaherty, S. D. Nathan
  • Mini Symposium B94 – Learning from Registries and Clinical Trials in ILD
  • Monday, May 16, 2:15-3:45 p.m.
  • Summary: Researchers analyzed rates of hospitalization in patients the PFF Patient Registry and discovered that rates were similar between ILD subtypes. The need for inpatient hospitalization was associated with an increased risk of death or transplant in the overall cohort. Risk of death or transplant was highest following hospitalization in idiopathic pulmonary fibrosis (IPF) and lowest in non-IPF idiopathic interstitial pneumonia.

Poster #8487: Visual and Quantitative CT Derived Parameters Predict Transplant-Free Survival in Patients with Interstitial Lung Disease: Results from the Pulmonary Fibrosis Foundation Registry

  • A.S. Oh, D. A. Lynch, K. R. Flaherty, S. M. Humphries, Pulmonary Fibrosis Foundation
  • Mini Symposium B94 – Learning from Registries and Clinical Trials in ILD Registry Investigators
  • Monday, May 16, 3:05-3:15 p.m.
  • Summary: Using published diagnostic criteria for usual interstitial pneumonia (UIP) in a population of individuals with clinically diagnosed ILD in the PFF Registry, researchers explored the relationship between CT pattern, fibrosis extent, and transplant-free survival. A definite UIP pattern and extent of fibrosis scored by data-driven textural analysis (DTA) are predictors of transplant-free survival in a heterogeneous group of patients diagnosed with ILD.

Poster #11428: Comparison of Interstitial Lung Disease Diagnoses in Urban and Rural Areas Among Patients in the Pulmonary Fibrosis Foundation Patient Registry

  • A.E. Dimmock, E. White, Y. Furuya, E. Freiheit, H. Kim
  • Thematic Poster Session C50 – Emerging EPI in Obstructive and Restrictive Lung Disease
  • Tuesday, May 17, 9:30 a.m.- 3:45 p.m.
  • Summary: Using the PFF Patient Registry, the study team found that hypersensitivity pneumonitis and exposure-related ILDs were more prevalent in ILD patients who live in rural areas and were associated with certain types of fuel use. The investigators concluded that coal and wood fuel use may explain the different types of ILDs found in patients who live in rural areas.

The PFF Care Center Network, a group of 68 medical centers nationwide that specialize in the multidisciplinary care of individuals living with PF, was utilized in the following study on palliative care —

Poster #5851: Discordance in Actual Versus Perceived Access to Palliative Care Services for Pulmonary Fibrosis Foundation Care Centers

  • R.A. Gersten, B. Seth, K. O. Lindell, S. K. Danoff
  • Thematic Poster Session B36 – Spectrum of Fibrotic Interstitial Lung Diseases
  • Monday, May 16, 9:30 a.m.-3:45 p.m.
  • Summary: Providers at PFF Care Center Network sites view palliative care as an important resource for their patients with pulmonary fibrosis. However, significant discordance exists between provider-reported and actual access to local outpatient and inpatient palliative care services, which may be an important barrier to palliative care referral for patients with pulmonary fibrosis.

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About the Pulmonary Fibrosis Foundation

The mission of the Pulmonary Fibrosis Foundation is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and to providing unequaled support and education resources for patients, caregivers, family members, and health care providers. The PFF has a three-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all of the requirements of the National Health Council Standards of Excellence Certification Program® and has earned the Guidestar Platinum Seal of Transparency. For more information, visit or call 844.TalkPFF (844.825.5733).