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Prevalence, management and burden of mastocytosis from the physician’s perspective: A nationwide study
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  • Julien Rossignol,
  • Laurence Bouillet,
  • Cristina Bulai Livideanu,
  • Stephane Barete,
  • Julie Bruneau,
  • Clément Gourguechon,
  • Laura Polivka,
  • Maël Heiblig,
  • Philippe Guilpain,
  • Yannick Chantran,
  • Olivier Tournilhac,
  • Louis Terriou,
  • David Launay,
  • Catharina Chatain,
  • gandhi damaj,
  • Thomas Ballul,
  • celine Greco,
  • Laurent Frenzel,
  • Cécile Meni,
  • Caroline Gaudy-Marqueste,
  • Marie Gousseff,
  • Edwige Le Mouel,
  • Antoine Néel,
  • Dana Ranta,
  • Roland Jaussaud,
  • Thierry Molina,
  • Ludovic Lhermitte,
  • Leila Maouche-Chrétien,
  • Fabien Pelletier,
  • Florence Castelain,
  • Frédérique Retornaz,
  • Quentin Cabrera,
  • Patricia Zunic,
  • Marie Pierre Gourin,
  • Ewa Wierzbicka,
  • Jean François Viallard,
  • Christian Lavigne,
  • Cyrille Hoarau,
  • Isabelle DURIEU,
  • Sophie Dimicoli-Salazar,
  • Jose Miguel Torregrosa-Diaz,
  • Angele Soria,
  • olivier lortholary,
  • Trevor Stanbury,
  • Benoit Bouquillon,
  • Cedric Sauvage,
  • Rose Marie Javier,
  • Olivier Hermine,
  • Michel Arock
Julien Rossignol
Hopital Universitaire Necker-Enfants Malades

Corresponding Author:[email protected]

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Laurence Bouillet
Universite Grenoble Alpes
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Cristina Bulai Livideanu
Centre Hospitalier Universitaire de Toulouse
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Stephane Barete
Hopital Universitaire Necker-Enfants Malades
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Julie Bruneau
Hopital Universitaire Necker-Enfants Malades
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Clément Gourguechon
Centre Hospitalier Universitaire Amiens-Picardie
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Laura Polivka
Hopital Universitaire Necker-Enfants Malades
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Maël Heiblig
Centre Hospitalier Lyon Sud
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Philippe Guilpain
Hopital Saint-Eloi Departement de medecine interne
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Yannick Chantran
Sorbonne Universite
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Olivier Tournilhac
Centre Hospitalier Universitaire de Clermont-Ferrand
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Louis Terriou
Centre Hospitalier Universitaire de Lille
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David Launay
Centre Hospitalier Universitaire de Lille
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Catharina Chatain
Universite Grenoble Alpes
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gandhi damaj
Universite de Caen Normandie Unite de Formation et de Recherche en Sante
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Thomas Ballul
Hopital Universitaire Necker-Enfants Malades
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celine Greco
Universite Paris Cite UFR de Medecine Site Necker
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Laurent Frenzel
Hopital Universitaire Necker-Enfants Malades
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Cécile Meni
Hopital Universitaire Necker-Enfants Malades
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Caroline Gaudy-Marqueste
Assistance Publique Hopitaux de Marseille
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Marie Gousseff
Centre Hospitalier Bretagne Atlantique
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Edwige Le Mouel
Centre Hospitalier Universitaire de Rennes
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Antoine Néel
Hotel-Dieu Service de Medecine Interne
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Dana Ranta
Centre Hospitalier Regional Universitaire de Nancy Hopital Central
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Roland Jaussaud
Centre Hospitalier Regional Universitaire de Nancy Hopital d'Enfants
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Thierry Molina
Assistance Publique - Hopitaux de Paris
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Ludovic Lhermitte
Assistance Publique - Hopitaux de Paris
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Leila Maouche-Chrétien
Hopital Universitaire Necker-Enfants Malades
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Fabien Pelletier
Centre Hospitalier Universitaire de Besancon
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Florence Castelain
Universite de Franche-Comte
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Frédérique Retornaz
Hopital Europeen Marseille
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Quentin Cabrera
Centre Hospitalier Universitaire de La Reunion Sites Sud
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Patricia Zunic
Centre Hospitalier Universitaire de La Reunion Sites Sud
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Marie Pierre Gourin
CHU Dupuytren 2
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Ewa Wierzbicka
Centre Hospitalier Universitaire de Poitiers
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Jean François Viallard
Centre Hospitalier Universitaire de Bordeaux
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Christian Lavigne
Centre Hospitalier Universitaire d'Angers
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Cyrille Hoarau
Centre Hospitalier Regional Universitaire de Tours
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Isabelle DURIEU
Centre Hospitalier Lyon Sud
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Sophie Dimicoli-Salazar
Centre Hospitalier Universitaire de Bordeaux
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Jose Miguel Torregrosa-Diaz
Centre Hospitalier Universitaire de Poitiers
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Angele Soria
Hopital Tenon
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olivier lortholary
Hopital Universitaire Necker-Enfants Malades
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Trevor Stanbury
Pro-Pens
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Benoit Bouquillon
Carely
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Cedric Sauvage
Carely
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Rose Marie Javier
Les Hopitaux Universitaires de Strasbourg Hopital de Hautepierre
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Olivier Hermine
Hopital Universitaire Necker-Enfants Malades
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Michel Arock
Hopital Universitaire Pitie-Salpetriere
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Abstract

Background: Mastocytosis is characterized by the accumulation of abnormal mast cells in various organs. Data on the prevalence of mastocytosis are heterogeneous, with the condition’s prevalence estimated to be between 9.6 and 23.9 per 100,000 inhabitants. Patients may present signs and symptoms that can severely impact quality of life (QoL), but reported data are scarce. Thus, we performed a nationwide study to estimate the prevalence and to assess the management and burden of adults with mastocytosis in France according to physician assessments. Methods: We developed an online survey comprising 25 questions investigating various aspects of mastocytosis and asked 6,239 physicians to respond. Data concerning physician characteristics and the number of patients followed were used to estimate overall prevalence. To assess patients’ QoL, we focused on the presence of signs and symptoms and the patients’ burden specifically in those with either indolent systemic mastocytosis (ISM) or mastocytosis in the skin (MIS). Results: Between July 11, 2023, and September 1, 2023, 1,169 physicians (18.7%) completed the survey. These physicians managed 4,121 mastocytosis patients, corresponding to an estimated prevalence of mastocytosis of 8.5 per 100,000 in France. In the ISM/MIS population (representing 76% of mastocytosis patients), 53% presented moderate to severe symptoms (mainly skin, digestive and general symptoms). Overall, physicians indicated that there was substantial burden associated with these symptoms in almost all fields of QoL analyzed. Conclusions: Our results provide further evidence of the burden associated with mastocytosis and highlight the need to improve QoL in these patients.