Associations between resources and practices of ILD centers and outcomes in patients with idiopathic pulmonary fibrosis: data from the IPF-PRO Registry

the IPF-PRO Registry Investigators

doi:10.1186/s12931-021-01921-7

Associations between resources and practices of ILD centers and outcomes in patients with idiopathic pulmonary fibrosis: data from the IPF-PRO Registry

the IPF-PRO Registry Investigators

Medicine - Pulmonary, Allergy, Critical

Research output: Contribution to journal › Article › peer-review

Abstract

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.

Original language	English (US)
Article number	3
Journal	Respiratory research
Volume	23
Issue number	1
DOIs	https://doi.org/10.1186/s12931-021-01921-7
State	Published - Dec 2022

Bibliographical note

Funding 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).

Funding Information:
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.

Funding Information:
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.

Publisher Copyright:
© 2022, The Author(s).

Keywords

Health resources
Hospitalization
Interstitial lung disease
Pulmonary fibrosis
Tertiary healthcare

PubMed: MeSH publication types

Journal Article
Multicenter Study
Observational Study

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access

10.1186/s12931-021-01921-7

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Cite this

@article{4efcaa756e944c7ab0e21d8cbe295304,

title = "Associations between resources and practices of ILD centers and outcomes in patients with idiopathic pulmonary fibrosis: data from the IPF-PRO Registry",

abstract = "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.",

keywords = "Health resources, Hospitalization, Interstitial lung disease, Pulmonary fibrosis, Tertiary healthcare",

author = "{the IPF-PRO Registry Investigators} and {de Andrade}, {Joao A.} and Tejaswini Kulkarni and Neely, {Megan L.} and Hellkamp, {Anne S.} and Case, {Amy Hajari} and Culver, {Daniel A.} and Kalpalatha Guntupalli and Shaun Bender and Conoscenti, {Craig S.} and Snyder, {Laurie D.} and Albert Baker and Scott Beegle and Belperio, {John A.} and Rany Condos and Francis Cordova and Culver, {Daniel A.} and Daniel Dilling and John Fitzgerald and Leann Silhan and Flaherty, {Kevin R.} and Kevin Gibson and Mridu Gulati and Kalpalatha Guntupalli and Nishant Gupta and Case, {Amy Hajari} and David Hotchkin and Huie, {Tristan J.} and Kaner, {Robert J.} and Kim, {Hyun J.} and Lancaster, {Lisa H.} and Mark Steele and Lasky, {Joseph A.} and Doug Lee and Timothy Liesching and Randolph Lipchik and Jason Lobo and Luckhardt, {Tracy R.} and {de Andrade}, {Joao A.} and Yolanda Mageto and Howard Huang and Prema Menon and Yolanda Mageto and Andrew Namen and Oldham, {Justin M.} and Tessy Paul and David Zhang and Anna Podolanczuk and David Lederer and Patel, {Nina M.} and Mary Porteous",

note = "Funding Information: The IPF-PRO/ILD-PRO{\texttrademark} Registry is funded by Boehringer Ingelheim Pharmaceuticals, Inc. (BIPI) and co-ordinated by the Duke Clinical Research Institute (DCRI). Funding Information: 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. Funding Information: 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{\textquoteright}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. Publisher Copyright: {\textcopyright} 2022, The Author(s).",

year = "2022",

month = dec,

doi = "10.1186/s12931-021-01921-7",

language = "English (US)",

volume = "23",

journal = "Respiratory research",

issn = "1465-9921",

publisher = "BioMed Central",

number = "1",

}

TY - JOUR

T1 - Associations between resources and practices of ILD centers and outcomes in patients with idiopathic pulmonary fibrosis

T2 - data from the IPF-PRO Registry

AU - the IPF-PRO Registry Investigators

AU - de Andrade, Joao A.

AU - Kulkarni, Tejaswini

AU - Neely, Megan L.

AU - Hellkamp, Anne S.

AU - Case, Amy Hajari

AU - Culver, Daniel A.

AU - Guntupalli, Kalpalatha

AU - Bender, Shaun

AU - Conoscenti, Craig S.

AU - Snyder, Laurie D.

AU - Baker, Albert

AU - Beegle, Scott

AU - Belperio, John A.

AU - Condos, Rany

AU - Cordova, Francis

AU - Culver, Daniel A.

AU - Dilling, Daniel

AU - Fitzgerald, John

AU - Silhan, Leann

AU - Flaherty, Kevin R.

AU - Gibson, Kevin

AU - Gulati, Mridu

AU - Guntupalli, Kalpalatha

AU - Gupta, Nishant

AU - Case, Amy Hajari

AU - Hotchkin, David

AU - Huie, Tristan J.

AU - Kaner, Robert J.

AU - Kim, Hyun J.

AU - Lancaster, Lisa H.

AU - Steele, Mark

AU - Lasky, Joseph A.

AU - Lee, Doug

AU - Liesching, Timothy

AU - Lipchik, Randolph

AU - Lobo, Jason

AU - Luckhardt, Tracy R.

AU - de Andrade, Joao A.

AU - Mageto, Yolanda

AU - Huang, Howard

AU - Menon, Prema

AU - Mageto, Yolanda

AU - Namen, Andrew

AU - Oldham, Justin M.

AU - Paul, Tessy

AU - Zhang, David

AU - Podolanczuk, Anna

AU - Lederer, David

AU - Patel, Nina M.

AU - Porteous, Mary

N1 - Funding 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). Funding Information: 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. Funding Information: 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. Publisher Copyright: © 2022, The Author(s).

PY - 2022/12

Y1 - 2022/12

N2 - 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.

AB - 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.

KW - Health resources

KW - Hospitalization

KW - Interstitial lung disease

KW - Pulmonary fibrosis

KW - Tertiary healthcare

UR - http://www.scopus.com/inward/record.url?scp=85122826787&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85122826787&partnerID=8YFLogxK

U2 - 10.1186/s12931-021-01921-7

DO - 10.1186/s12931-021-01921-7

M3 - Article

C2 - 34996465

AN - SCOPUS:85122826787

SN - 1465-9921

VL - 23

JO - Respiratory research

JF - Respiratory research

IS - 1

M1 - 3

ER -

Associations between resources and practices of ILD centers and outcomes in patients with idiopathic pulmonary fibrosis: data from the IPF-PRO Registry

Abstract

Bibliographical note

Keywords

PubMed: MeSH publication types

UN SDGs

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