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1. Compliance with Early Long-Term Prophylaxis Guidelines for Severe Hemophilia A

Author

Aouba, Achille, Harroche, Annie, Legrand, Faezeh, Rothschild, Chantal, Torchet, Marie-Françoise, d’Oiron, Roseline, Lambert, Thierry, Laurian, Yves, Rafowicz, Anne, Biernat, Jennifer, Goudemand, Jenny, Parquet, Armelle, Tintillier, Véronique, Wibaut, Bénédicte, Assollant, Anne Durin, Meunier, Sandrine, Négrier, Claude, Castet, Sabine, Guérin, Viviane, Huguenin, Yohann, Micheau, Marguerite, Ryman, Anne, Chambost, Hérve, Falaise, Céline, Claeyssens, Ségolène, Thiercelin-Legrand, Marie Françoise, Fiks-Sigaud, Marianne, Fouassier, Marc, Fressinaud, Edith, Trossaert, Marc, Voisin, Sophie, Faradji, Albert, Lutz, Patrick, Briquel, Marie Elisabeth, Frotscher, Birgit, Fimbel, Béatrice, Gruel, Yves, Guerois, Claude, Regina, Sandra, Valentin, Jean Baptiste, Biron Andreani, Christine, Codine, Philippe, Donadio, Daniel, Navarro, Robert, Rospide, Paola, Schved, Jean-François, Berger, Claire, Collet, Bénédicte, Derlon, Annie Borel, Gautier, Philippe, Bayart, Sophie, Guillet, Ben⊚ıt, Borg, JeanneYvonne, Dumesnil, Cécile, Normand, Charline, Schneider, Pascale, Tron, Philippe, Vannier, Jean-Pierre, Dutrillaux, Fabienne, Volot, Fabienne, Gembara, Piotr, Marques-Verdier, Alain, Adjaoud, Dalila, Barro, Claire, Pernod, Gilles, Polack, Ben⊚ıt, Pouzol, Patricia, Ounnoughene, Nadra, Paugy, Patricia, Robert, Valérie, Stieltjes, Natalie, Bastenaire, Brigitte, de Raucourt, Emmanuelle, Peynet, Jocelyne, Li-Thiao-Te, Valérie, Pautard, Brigitte, Behar, Catherine, Gorde, Stéphanie, Munzer, Martine, Gay, Valérie, Benz Lemoine, Elisabeth, Macchi, Laurent, De Lumley, Lionel, Gaillard, Solange, Oudot, Caroline, Deville, Anne, Monpoux, Fabrice, Bertrand, Marie Anne, Pan-Petesch, Brigitte, Hassoun, Abel, Coatmelec, Brigitte, Beurrier, Philippe, Damay, Michèle, Moreau, Philippe, Pouille-Lievin, Odile, Schoepfer, Caroline, Tarral, Eliane, Bianchin, Monique, Nguyen, Joël, Pincemaille, Olivier, Peter, Marie-Odile, Saultier, Paul, Guillaume, Yves, Demiguel, Virginie, Borel-Derlon, Annie, Vinciguerra, Christine, Boucekine, Mohamed, Baumstarck, Karine, Calvez, Thierry, and Chambost, Hervé

Published
2021
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2. Compliance with Early Long-Term Prophylaxis Guidelines for Severe Hemophilia A

Author

Saultier, Paul, primary, Guillaume, Yves, additional, Demiguel, Virginie, additional, Berger, Claire, additional, Borel-Derlon, Annie, additional, Claeyssens, Ségolène, additional, Harroche, Annie, additional, Oudot, Caroline, additional, Rafowicz, Anne, additional, Trossaert, Marc, additional, Wibaut, Bénédicte, additional, Vinciguerra, Christine, additional, Boucekine, Mohamed, additional, Baumstarck, Karine, additional, Meunier, Sandrine, additional, Calvez, Thierry, additional, Chambost, Hervé, additional, Aouba, Achille, additional, Legrand, Faezeh, additional, Rothschild, Chantal, additional, Torchet, Marie-Françoise, additional, d’Oiron, Roseline, additional, Lambert, Thierry, additional, Laurian, Yves, additional, Biernat, Jennifer, additional, Goudemand, Jenny, additional, Parquet, Armelle, additional, Tintillier, Véronique, additional, Assollant, Anne Durin, additional, Négrier, Claude, additional, Castet, Sabine, additional, Guérin, Viviane, additional, Huguenin, Yohann, additional, Micheau, Marguerite, additional, Ryman, Anne, additional, Chambost, Hérve, additional, Falaise, Céline, additional, Thiercelin-Legrand, Marie Françoise, additional, Fiks-Sigaud, Marianne, additional, Fouassier, Marc, additional, Fressinaud, Edith, additional, Voisin, Sophie, additional, Faradji, Albert, additional, Lutz, Patrick, additional, Briquel, Marie Elisabeth, additional, Frotscher, Birgit, additional, Fimbel, Béatrice, additional, Gruel, Yves, additional, Guerois, Claude, additional, Regina, Sandra, additional, Valentin, Jean Baptiste, additional, Biron Andreani, Christine, additional, Codine, Philippe, additional, Donadio, Daniel, additional, Navarro, Robert, additional, Rospide, Paola, additional, Schved, Jean-François, additional, Collet, Bénédicte, additional, Derlon, Annie Borel, additional, Gautier, Philippe, additional, Bayart, Sophie, additional, Guillet, Ben⊚ıt, additional, Borg, JeanneYvonne, additional, Dumesnil, Cécile, additional, Normand, Charline, additional, Schneider, Pascale, additional, Tron, Philippe, additional, Vannier, Jean-Pierre, additional, Dutrillaux, Fabienne, additional, Volot, Fabienne, additional, Gembara, Piotr, additional, Marques-Verdier, Alain, additional, Adjaoud, Dalila, additional, Barro, Claire, additional, Pernod, Gilles, additional, Polack, Ben⊚ıt, additional, Pouzol, Patricia, additional, Ounnoughene, Nadra, additional, Paugy, Patricia, additional, Robert, Valérie, additional, Stieltjes, Natalie, additional, Bastenaire, Brigitte, additional, de Raucourt, Emmanuelle, additional, Peynet, Jocelyne, additional, Li-Thiao-Te, Valérie, additional, Pautard, Brigitte, additional, Behar, Catherine, additional, Gorde, Stéphanie, additional, Munzer, Martine, additional, Gay, Valérie, additional, Benz Lemoine, Elisabeth, additional, Macchi, Laurent, additional, De Lumley, Lionel, additional, Gaillard, Solange, additional, Deville, Anne, additional, Monpoux, Fabrice, additional, Bertrand, Marie Anne, additional, Pan-Petesch, Brigitte, additional, Hassoun, Abel, additional, Coatmelec, Brigitte, additional, Beurrier, Philippe, additional, Damay, Michèle, additional, Moreau, Philippe, additional, Pouille-Lievin, Odile, additional, Schoepfer, Caroline, additional, Tarral, Eliane, additional, Bianchin, Monique, additional, Nguyen, Joël, additional, Pincemaille, Olivier, additional, and Peter, Marie-Odile, additional

Published
2021
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3. Compliance with Early Long-Term Prophylaxis Guidelines for Severe Hemophilia A

Author

Paul Saultier, Yves Guillaume, Virginie Demiguel, Claire Berger, Annie Borel-Derlon, Ségolène Claeyssens, Annie Harroche, Caroline Oudot, Anne Rafowicz, Marc Trossaert, Bénédicte Wibaut, Christine Vinciguerra, Mohamed Boucekine, Karine Baumstarck, Sandrine Meunier, Thierry Calvez, Hervé Chambost, Achille Aouba, Faezeh Legrand, Chantal Rothschild, Marie-Françoise Torchet, Roseline d’Oiron, Thierry Lambert, Yves Laurian, Jennifer Biernat, Jenny Goudemand, Armelle Parquet, Véronique Tintillier, Anne Durin Assollant, Claude Négrier, Sabine Castet, Viviane Guérin, Yohann Huguenin, Marguerite Micheau, Anne Ryman, Hérve Chambost, Céline Falaise, Marie Françoise Thiercelin-Legrand, Marianne Fiks-Sigaud, Marc Fouassier, Edith Fressinaud, Sophie Voisin, Albert Faradji, Patrick Lutz, Marie Elisabeth Briquel, Birgit Frotscher, Béatrice Fimbel, Yves Gruel, Claude Guerois, Sandra Regina, Jean Baptiste Valentin, Christine Biron Andreani, Philippe Codine, Daniel Donadio, Robert Navarro, Paola Rospide, Jean-François Schved, Bénédicte Collet, Annie Borel Derlon, Philippe Gautier, Sophie Bayart, Ben⊚ıt Guillet, JeanneYvonne Borg, Cécile Dumesnil, Charline Normand, Pascale Schneider, Philippe Tron, Jean-Pierre Vannier, Fabienne Dutrillaux, Fabienne Volot, Piotr Gembara, Alain Marques-Verdier, Dalila Adjaoud, Claire Barro, Gilles Pernod, Ben⊚ıt Polack, Patricia Pouzol, Nadra Ounnoughene, Patricia Paugy, Valérie Robert, Natalie Stieltjes, Brigitte Bastenaire, Emmanuelle de Raucourt, Jocelyne Peynet, Valérie Li-Thiao-Te, Brigitte Pautard, Catherine Behar, Stéphanie Gorde, Martine Munzer, Valérie Gay, Elisabeth Benz Lemoine, Laurent Macchi, Lionel De Lumley, Solange Gaillard, Anne Deville, Fabrice Monpoux, Marie Anne Bertrand, Brigitte Pan-Petesch, Abel Hassoun, Brigitte Coatmelec, Philippe Beurrier, Michèle Damay, Philippe Moreau, Odile Pouille-Lievin, Caroline Schoepfer, Eliane Tarral, Monique Bianchin, Joël Nguyen, Olivier Pincemaille, Marie-Odile Peter, Centre recherche en CardioVasculaire et Nutrition = Center for CardioVascular and Nutrition research (C2VN), Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Hôpital de la Timone [CHU - APHM] (TIMONE), Assistance Publique - Hôpitaux de Marseille (APHM), Hôpitaux de Saint Maurice (HNSM), Centre Hospitalier Universitaire de Saint-Etienne [CHU Saint-Etienne] (CHU ST-E), Centre Universitaire des Maladies Rénales [CHU Caen] (CUMR Caen), Université de Caen Normandie (UNICAEN), Normandie Université (NU)-Normandie Université (NU)-CHU Caen, Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN)-Tumorothèque de Caen Basse-Normandie (TCBN), Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), CHU Necker - Enfants Malades [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), CHU Limoges, AP-HP Hôpital Bicêtre (Le Kremlin-Bicêtre), Centre hospitalier universitaire de Nantes (CHU Nantes), Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille), Hospices Civils de Lyon (HCL), Centre d'études et de recherche sur les services de santé et la qualité de vie (CEReSS), Aix Marseille Université (AMU), Institut Pierre Louis d'Epidémiologie et de Santé Publique (iPLESP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), and Université de Montpellier (UM)

Subjects
Male, Pediatrics, medicine.medical_specialty, Multivariate analysis, [SDV]Life Sciences [q-bio], Population, Long term prophylaxis, Kaplan-Meier Estimate, Hemophilia A, Severe hemophilia A, Severity of Illness Index, Early initiation, Drug Administration Schedule, 03 medical and health sciences, 0302 clinical medicine, 030225 pediatrics, Humans, Medicine, Cumulative incidence, 030212 general & internal medicine, Practice Patterns, Physicians', education, Birth Year, [SDV.MHEP.PED]Life Sciences [q-bio]/Human health and pathology/Pediatrics, education.field_of_study, business.industry, Infant, Newborn, Infant, Blood Coagulation Factors, Logistic Models, Child, Preschool, Practice Guidelines as Topic, Pediatrics, Perinatology and Child Health, Cohort, France, Guideline Adherence, Joint Diseases, business
Abstract

International audience; Objectives: To evaluate the applicability and compliance with guidelines for early initiation of long-term prophylaxis in infants with severe hemophilia A and to identify factors associated with guideline compliance.Study design: This real-world, prospective, multicenter, population-based FranceCoag study included almost all French boys with severe hemophilia A, born between 2000 and 2009 (ie, after guideline implementation).Results: We included 333 boys in the study cohort. The cumulative incidence of long-term prophylaxis use was 61.2% at 3 years of age vs 9.5% in a historical cohort of 39 boys born in 1996 (ie, before guideline implementation). The guidelines were not applicable in 23.1% of patients due to an early intracranial bleeding or inhibitor development. Long-term prophylaxis was delayed in 10.8% of patients. In the multivariate analysis, 2 variables were significantly associated with "timely long-term prophylaxis" as compared with "delayed long-term prophylaxis": hemophilia treating center location in the southern regions of France (OR 23.6, 95% CI 1.9-286.7, P = .013 vs Paris area) and older age at long-term prophylaxis indication (OR 7.2 for each additional year, 95% CI 1.2-43.2, P = .031). Long-term prophylaxis anticipation was observed in 39.0% of patients. Earlier birth year (OR 0.5, 95% CI 0.3-0.8, P = .010 for birth years 2005-2009 vs 2000-2004) and age at first factor replacement (OR 1.9 for each additional year, 95% CI 1.2-3.0, P = .005) were significantly associated with "long-term prophylaxis guideline compliance" vs "long-term prophylaxis anticipation."Conclusions: This study suggests that long-term prophylaxis guidelines are associated with increased long-term prophylaxis use. However, early initiation of long-term prophylaxis remains a challenge.

Published
2021
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5. What factors influence the age at diagnosis of hemophilia? Results of the French hemophilia cohort

Author

Pascale Schneider, Hervé Chambost, Brigitte Coatmelec, Thierry Calvez, Valérie Gaboulaud, and Anne Rafowicz

Subjects
Male, Pediatrics, medicine.medical_specialty, Genetic counseling, Hemophilia A, Severity of Illness Index, Cohort Studies, Severity of illness, Epidemiology, medicine, Coagulopathy, Humans, Family history, Family Health, business.industry, Age Factors, Infant, Newborn, Infant, medicine.disease, El Niño, Child, Preschool, Pediatrics, Perinatology and Child Health, Cohort, Female, France, business, Cohort study
Abstract

Objective: The diagnosis of hemophilia was reported as delayed in historic studies. We therefore investigated this issue to provide current epidemiologic data in a large series of patients. Study design: The French cohort provided the opportunity to investigate the age at diagnosis and the circumstances of diagnosis in 599 individuals with hemophilia born between 1980 and 1994. The type and the severity of hemophilia, the family history, and the period of birth were analyzed as potential modifying factors. Results: The median age at diagnosis was 7.7 months, with significant differences among subgroups: 5.8 months in severe hemophilia, 9.0 months in moderate forms, 28.6 months in mild forms, 0.4 months in the case of hemophilic brothers, and 10.1 months in de novo hemophilia, which accounted for 55.3% of cases. In severe forms we observed a trend for earlier diagnosis throughout 3 consecutive periods from 1980 to 1994. Of bleeding epsiode, testing due to family history, or routine testing, bleeding was the main circumstance of diagnosis (59.9%). Conclusions: Diagnosis was made earlier than in historic series, but it remained somewhat delayed. Early diagnosis will require efforts in the fields of genetic counseling and specific diagnosis of early bleeding, even without family history, because of the high incidence of de novo hemophilia. (J Pediatr 2002;141:548-52)

Published
2002

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