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Observational Study
. 2022 Jan 7;23(1):3.
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

Joao A de Andrade  1 , Tejaswini Kulkarni  2 , Megan L Neely  3   4 , Anne S Hellkamp  3   4 , Amy Hajari Case  5 , Daniel A Culver  6 , Kalpalatha Guntupalli  7 , Shaun Bender  8 , Craig S Conoscenti  8 , Laurie D Snyder  3   4 ; IPF-PRO Registry Investigators
Collaborators, Affiliations
Observational Study

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

Joao A de Andrade et al. Respir Res. .

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.

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Conflict of interest statement

JAdA reports personal fees from BI. TK reports speaker fees from BI. MLN, ASH and LDS are faculty members at DCRI, which receives funding from BIPI to coordinate the IPF-PRO/ILD-PRO Registry. AHC reports personal fees and non-financial support from BI, personal fees from Genentech, and non-financial support from DCRI. DAC reports personal fees from BI and Genentech. KG has nothing to disclose. SB and CSC are employees of BIPI.

Figures

Fig. 1
Fig. 1
Site staffing models. Based on data from 28 sites. Data were missing from one site for "Rounds on patients hospitalized at your center". DME durable medical equipment, PA prior authorization
See this image and copyright information in PMC

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