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
AU - Kreider, Maryl
AU - Raj, Rishi
AU - Mohabir, Paul
AU - Ramaswamy, Murali
AU - Russell, Tonya
AU - Sachs, Paul
AU - Safdar, Zeenat
AU - Shafazand, Shirin
AU - Glassberg, Marilyn
AU - Siddiqi, Ather
AU - Asi, Wael
AU - Sigal, Barry
AU - Strek, Mary E.
AU - Suliman, Sally
AU - Roman, Jesse
AU - Tabak, Jeremy
AU - Walia, Rajat
AU - Whelan, Timothy P.M.
N1 - 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
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 -