The significance of multidisciplinary team meetings in diagnosing and managing childhood interstitial lung disease within the RespiRare network

Author:

Cassibba Julie1ORCID,Epaud Ralph23ORCID,Berteloot Laureline4,Aberbache Sabrina5,Bitton Lauren1,Fletcher Camille1,Fleury Manon1,Delestrain Céline23,Corvol Harriet16ORCID,de Becdelièvre Alix37,Borie Raphaël8,Legendre Marie910,Coulomb l'Herminé Aurore11,Louvrier Camille910,Lustremant Céline5,Sari Hassoun Meryem5,Sileo Chiara12,Hadchouel Alice1314ORCID,Nathan Nadia19ORCID

Affiliation:

1. Department of Pediatric Pulmonology and Reference Center for Rare Lung Diseases, RespiRare Armand Trousseau Hospital, APHP, Sorbonne University Paris France

2. Department of Pediatric and Reference Center for Rare Lung Diseases, RespiRare Centre Hospitalier Intercommunal de Créteil Créteil France

3. INSERM, IMRB University Paris Est Créteil Créteil France

4. Radiology Department Necker Enfants Malades Hospital, AP‐HP Paris France

5. French Reference Network for Rare Respiratory Diseases RespiFIL Bicêtre Hospital, AP‐HP Kremlin‐Bicêtre France

6. Centre De Recherche Saint Antoine (CRSA) Sorbonne University Paris France

7. Molecular Genetics Department Mondor Hospital, AP‐HP Paris France

8. Service de Pneumologie A, Centre constitutif du centre de référence des Maladies Pulmonaires Rares Inserm, PHERE, Hôpital Bichat, APHP, FHU APOLLO, Université Paris Cité Paris France

9. Laboratory of Childhood Genetic Diseases, Inserm UMR_S933 Armand Trousseau Hospital, Sorbonne University Paris France

10. Molecular Genetics Department Armand Trousseau Hospital, AP‐HP Paris France

11. Department of Pathology Armand Trousseau Hospital, APHP, Sorbonne University Paris France

12. Radiology Department Armand Trousseau Hospital, APHP, Sorbonne University Paris France

13. Pediatric Pulmonology Department and Reference Center for Rare Respiratory Diseases RespiRare Hôpital Necker‐Enfants Malades, APHP and Université Paris Cité Paris France

14. INSERM U1151 Institut Necker Enfants Malades Paris France

Abstract

AbstractIntroductionChildhood Interstitial Lung Disease (chILD) represents a rare and severe group of diseases for which the etiologic workup, classification, and management remain a challenge for most pediatric pulmonologists. In France in 2018, the RespiRare network established the first multidisciplinary team meetings (MDTm) dedicated to chILD. This study aims to investigate the impact of MDTm in chILD diagnosis and management as well as user satisfaction.MethodsThe MDTm took place on a monthly basis through video conferences. The participants consisted of a quorum and included pediatric pulmonologists, radiologists, geneticists, and pulmonologists, with an average of 10.5 participants per meeting. Patients provided consent to participate in MDTm and for data collection. Data were retrospectively extracted from MDTm reports. To evaluate the usefulness of the MDTm and the satisfaction of the participants, a survey was sent by email at least 3 months after the MDTm to the participants.ResultsA total of 216 chILD cases were discussed during 56 MDTm sessions. The median age of onset was 0.5 years (interquartile range 0–7). The MDTm sessions resulted in the correction of chILD etiology in 25% of cases (neuroendocrine cell hyperplasia of infancy 17%, surfactant metabolism disorder 8%, pulmonary alveolar proteinosis 4%, hemosiderosis 3%, sarcoidosis 3%, and others 34%), and chILD was ruled out in 7% of cases. A change in therapy was proposed for 46% of cases. User satisfaction was significant, particularly regarding their confidence in managing these rare diseases.Discussion and ConclusionDedicated MDTm sessions offer a unique opportunity to enhance chILD etiologic diagnosis and management, leading to increased physician knowledge and confidence in managing these patients.

Publisher

Wiley

Subject

Pulmonary and Respiratory Medicine,Pediatrics, Perinatology and Child Health

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