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Estimates of epidemiology, mortality and disease burden associated with progressive fibrosing interstitial lung disease in France (the PROGRESS study)

Mouhamad Nasser, Sophie Larrieu, Loic Boussel (), Salim Si-Mohamed (), Fabienne Bazin, Sébastien Marque, Jacques Massol, Françoise Thivolet-Bejui, Lara Chalabreysse, Delphine Maucort-Boulch (), Eric Hachulla (), Stéphane Jouneau, Katell Le Lay and Vincent Cottin ()
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Mouhamad Nasser: IVPC - Infections Virales et Pathologie Comparée - UMR 754 - EPHE - École Pratique des Hautes Études - PSL - Université Paris Sciences et Lettres - UCBL - Université Claude Bernard Lyon 1 - Université de Lyon - INRAE - Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement, HCL - Hospices Civils de Lyon
Sophie Larrieu: IQVIA
Loic Boussel: HCL - Hospices Civils de Lyon, CREATIS - Centre de Recherche en Acquisition et Traitement de l'Image pour la Santé - UCBL - Université Claude Bernard Lyon 1 - Université de Lyon - INSA Lyon - Institut National des Sciences Appliquées de Lyon - Université de Lyon - INSA - Institut National des Sciences Appliquées - UJM - Université Jean Monnet - Saint-Étienne - INSERM - Institut National de la Santé et de la Recherche Médicale - CNRS - Centre National de la Recherche Scientifique, MYRIAD - Modeling & analysis for medical imaging and Diagnosis - CREATIS - Centre de Recherche en Acquisition et Traitement de l'Image pour la Santé - UCBL - Université Claude Bernard Lyon 1 - Université de Lyon - INSA Lyon - Institut National des Sciences Appliquées de Lyon - Université de Lyon - INSA - Institut National des Sciences Appliquées - UJM - Université Jean Monnet - Saint-Étienne - INSERM - Institut National de la Santé et de la Recherche Médicale - CNRS - Centre National de la Recherche Scientifique
Salim Si-Mohamed: CREATIS - Centre de Recherche en Acquisition et Traitement de l'Image pour la Santé - UCBL - Université Claude Bernard Lyon 1 - Université de Lyon - INSA Lyon - Institut National des Sciences Appliquées de Lyon - Université de Lyon - INSA - Institut National des Sciences Appliquées - UJM - Université Jean Monnet - Saint-Étienne - INSERM - Institut National de la Santé et de la Recherche Médicale - CNRS - Centre National de la Recherche Scientifique
Fabienne Bazin: IQVIA
Sébastien Marque: IQVIA
Françoise Thivolet-Bejui: HCL - Hospices Civils de Lyon
Lara Chalabreysse: HCL - Hospices Civils de Lyon
Delphine Maucort-Boulch: LBBE - Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 - UCBL - Université Claude Bernard Lyon 1 - Université de Lyon - VAS - VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement - CNRS - Centre National de la Recherche Scientifique, HCL - Hospices Civils de Lyon, Service de Biostatistiques [Lyon] - HCL - Hospices Civils de Lyon
Eric Hachulla: CHRU Lille - Centre Hospitalier Régional Universitaire [CHU Lille], INFINITE - Institute for Translational Research in Inflammation - U 1286 - INSERM - Institut National de la Santé et de la Recherche Médicale - Université de Lille - CHRU Lille - Centre Hospitalier Régional Universitaire [CHU Lille]
Stéphane Jouneau: EHESP - École des Hautes Études en Santé Publique [EHESP], Irset - Institut de recherche en santé, environnement et travail - UA - Université d'Angers - UR - Université de Rennes - EHESP - École des Hautes Études en Santé Publique [EHESP] - INSERM - Institut National de la Santé et de la Recherche Médicale - Biosit : Biologie - Santé - Innovation Technologique - Structure Fédérative de Recherche en Biologie et Santé de Rennes
Vincent Cottin: IVPC - Infections Virales et Pathologie Comparée - UMR 754 - EPHE - École Pratique des Hautes Études - PSL - Université Paris Sciences et Lettres - UCBL - Université Claude Bernard Lyon 1 - Université de Lyon - INRAE - Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement, HCL - Hospices Civils de Lyon

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Abstract: BACKGROUND: There is a paucity of data on the epidemiology, survival estimates and healthcare resource utilisation and associated costs of patients with progressive fibrosing interstitial lung disease (PF-ILD) in France. An algorithm for extracting claims data was developed to indirectly identify and describe patients with PF-ILD in the French national administrative healthcare database.METHODS: The French healthcare database, the Système National des Données de Santé (SNDS), includes data related to ambulatory care, hospitalisations and death for 98.8% of the population. In this study, algorithms based on age, diagnosis and healthcare consumption were created to identify adult patients with PF-ILD other than idiopathic pulmonary fibrosis between 2010 and 2017. Incidence, prevalence, survival estimates, clinical features and healthcare resource usage and costs were described among patients with PF-ILD.RESULTS: We identified a total of 14,413 patients with PF-ILD. Almost half of them (48.1%) were female and the mean (± standard deviation) age was 68.4 (± 15.0) years. Between 2010 and 2017, the estimated incidence of PF-ILD ranged from 4.0 to 4.7/100,000 person-years and the estimated prevalence from 6.6 to 19.4/100,000 persons. The main diagnostic categories represented were exposure-related ILD other than hypersensitivity pneumonitis (n = 3486; 24.2%), idiopathic interstitial pneumonia (n = 3113; 21.6%) and rheumatoid arthritis-associated ILD (n = 2521; 17.5%). Median overall survival using Kaplan-Meier estimation was 3.7 years from the start of progression. During the study, 95.2% of patients had ≥ 1 hospitalisation for respiratory care and 34.3% were hospitalised in an intensive care unit. The median (interquartile range) total specific cost per patient during the follow-up period was €25,613 (10,622-54,287) and the median annual cost per patient was €18,362 (6856-52,026), of which €11,784 (3003-42,097) was related to hospitalisations. Limitations included the retrospective design and identification of cases through an algorithm in the absence of chest high-resolution computed tomography scans and pulmonary function tests.CONCLUSIONS: This large, real-world, longitudinal study provides important insights into the characteristics, epidemiology and healthcare resource utilisation and costs associated with PF-ILD in France using a comprehensive and exhaustive database, and provides vital evidence that PF-ILD represents a high burden on both patients and healthcare services. Trial registration ClinicalTrials.gov, NCT03858842. ISRCTN, ISRCTN12345678. Registered 3 January 2019-Retrospectively registered, https://clinicaltrials.gov/ct2/show/NCT03858842.

Keywords: Algorithms; Epidemiology; Healthcare resource utilisation; Interstitial lung disease; Progressive fibrosis (search for similar items in EconPapers)
Date: 2021-12
Note: View the original document on HAL open archive server: https://hal.science/hal-03260533v1
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Published in Respiratory Research, 2021, 22 (1), pp.162. ⟨10.1186/s12931-021-01749-1⟩

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Persistent link: https://EconPapers.repec.org/RePEc:hal:journl:hal-03260533

DOI: 10.1186/s12931-021-01749-1

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