Publication Date
1-7-2022
Journal
Respiratory Research
DOI
10.1186/s12931-021-01921-7
PMID
34996465
PMCID
PMC8740873
PubMedCentral® Posted Date
1-7-2022
PubMedCentral® Full Text Version
Post-print
Published Open-Access
yes
Keywords
Aged, Female, Follow-Up Studies, Hospitalization, Humans, Idiopathic Pulmonary Fibrosis, Lung Transplantation, Male, Middle Aged, Registries, Retrospective Studies, Surveys and Questionnaires, Interstitial lung disease, Pulmonary fibrosis, Health resources, Hospitalization, Tertiary healthcare
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.
Included in
Biochemistry, Biophysics, and Structural Biology Commons, Biology Commons, Health Services Administration Commons, Health Services Research Commons, Medical Specialties Commons
Comments
Trial registration ClinicalTrials.gov, NCT01915511. Registered 5 August 2013, https://clinicaltrials.gov/ct2/show/NCT01915511
Associated Data