Nicolas Javaud1, Adrien Altar2, Olivier Fain3, Paul-Georges Reuter4, Michel Desmaizieres5, Tomislav Petrovic6, Aiham Ghazali7, Isabelle Durand-Zaleski8, Laurence Bouillet9, Eric Vicaut10, David Launay11, Ludovic Martin12, Bernard Floccard13, Anne Gompel14, Alain Sobel15, Isabelle Boccon-Gibod16, Gisele Kanny17, Frederic Lapostolle18, Frederic Adnet19. 1. AP-HP, Urgences, Centre de référence sur les angiœdèmes à kinines, Hôpital Louis Mourier, Université Paris 7, 92700 Colombes, France; AP-HP, Urgences - Samu 93, Hôpital Avicenne, Université Paris 13, Inserm U942, 93000 Bobigny, France. Electronic address: nicolas.javaud@aphp.fr. 2. AP-HP, Urgences, Centre de référence sur les angiœdèmes à kinines, Hôpital Louis Mourier, Université Paris 7, 92700 Colombes, France. 3. AP-HP, Médecine Interne, DHUi2B, Centre de Référence associé sur les angiœdèmes à kinines (CRéAk), Hôpital Saint-Antoine, Université Paris 6, 75 012 Paris, France. Electronic address: olivier.fain@aphp.fr. 4. AP-HP, Urgences - Samu 93, Hôpital Avicenne, Université Paris 13, Inserm U942, 93000 Bobigny, France. Electronic address: paul-georges.reuter@aphp.fr. 5. AP-HP, Urgences - Samu 93, Hôpital Avicenne, Université Paris 13, Inserm U942, 93000 Bobigny, France. Electronic address: michel.desmaizieres@aphp.fr. 6. AP-HP, Urgences - Samu 93, Hôpital Avicenne, Université Paris 13, Inserm U942, 93000 Bobigny, France. Electronic address: tomislav.petrovic@aphp.fr. 7. AP-HP, Urgences, Hôpital Bichat, Université Paris 7, 75018 Paris, France.. Electronic address: aiham.ghazali@aphp.fr. 8. AP-HP, URCEco Ile de France, Hôpital de l'Hôtel-Dieu, Université Paris 12, 75 004 Paris, France. Electronic address: isabelle.durand-zaleski@aphp.fr. 9. Médecine Interne, Centre de Référence sur les angiœdèmes à kinines (CRéAk), CHU de Grenoble, 38043 Grenoble, France. Electronic address: LBouillet@chu-grenoble.fr. 10. AP-HP, Unité de Recherche Clinique, Hôpital Fernand Widal, Paris, France. Electronic address: eric.vicaut@aphp.fr. 11. Université de Lille, CHRU de Lille, Médecine Interne, Centre de Référence sur les angiœdèmes à kinines (CRéAk), Hôpital Claude Huriez, 59037 Lille Cedex, France. Electronic address: david.launay@chru-lille.fr. 12. Dermatologie, Centre de Référence sur les angiœdèmes à kinines (CRéAk), Université d'Angers, CHU d'Angers, 49 933 Angers, cedex, France. Electronic address: LuMartin@chu-angers.fr. 13. Hospices Civils de Lyon, Réanimation, Centre de Référence sur les angiœdèmes à kinines (CRéAk), CHU Edouard Herriot, 69 437 Lyon, Cedex, France. Electronic address: bernard.floccard@chu-lyon.fr. 14. Université de Paris-Descartes, AP-HP, HUPC, Unité de Gynécologie Endocrinienne, Hôpital Port Royal, 75001 Paris, France. 15. AP-HP, Hôpital Hôtel Dieu, Université Paris 5, 75004 Paris, France. Electronic address: alain.sobel@aphp.fr. 16. Médecine Interne, Centre de Référence sur les angiœdèmes à kinines (CRéAk), CHU de Grenoble, 38043 Grenoble, France. Electronic address: IBoccon-gibod@chu-grenoble.fr. 17. Médecine Interne, Centre de Référence sur les angiœdèmes à kinines (CRéAk), CHU de Nancy, 54 035 Nancy, France. Electronic address: gisele.kanny@univ-lorraine.fr. 18. AP-HP, Urgences - Samu 93, Hôpital Avicenne, Université Paris 13, Inserm U942, 93000 Bobigny, France. Electronic address: frederic.lapostolle@aphp.fr. 19. AP-HP, Urgences - Samu 93, Hôpital Avicenne, Université Paris 13, Inserm U942, 93000 Bobigny, France. Electronic address: frederic.adnet@aphp.fr.
Abstract
OBJECTIVE: Hereditary angiœdema (HAE) is a rare autosomal dominant disease characterized by recurrent, unpredictable, potentially life-threatening swelling. Objective is to assess the management of the acute HAE attacks in the real life setting through a call center in France. METHODS: A pre-specified ancillary study of SOS-HAE, a cluster-randomized prospective multicenter trial, was conducted. HAE patients were recruited from 8 participating reference centers. The outcome of interest was the rate of hospitalization. RESULTS: onerhundred patients were included. The median (quartile) age was 38 (29-53) years, and 66 (66%) were female. Eighty (80%) patients had HAE type I, 8 (8%) had HAE type II and 12 (12%) patients had FXII-HAE. Fifty-one (51%) patients had experienced at least one time the call center during the follow-up. Nine over 166 (5%) attacks for 9 different patients resulted in hospital admission to the hospital (in the short-stay unit, ie, <24 h) during the follow-up period. During 2 years, there were 166 calls to call center for 166 attacks. All attacks were treated at home after call center contact. CONCLUSIONS: Use of emergency departments and hospitalizations are reduced by the use of a coordinated national call center in HAE after therapeutic education program that promoted self-administration of specific treatment and use of call to call center. TRIAL REGISTRATION: clinicalTrials.gov identifier: NCT01679912.
RCT Entities:
OBJECTIVE: Hereditary angiœdema (HAE) is a rare autosomal dominant disease characterized by recurrent, unpredictable, potentially life-threatening swelling. Objective is to assess the management of the acute HAE attacks in the real life setting through a call center in France. METHODS: A pre-specified ancillary study of SOS-HAE, a cluster-randomized prospective multicenter trial, was conducted. HAE patients were recruited from 8 participating reference centers. The outcome of interest was the rate of hospitalization. RESULTS: onerhundred patients were included. The median (quartile) age was 38 (29-53) years, and 66 (66%) were female. Eighty (80%) patients had HAE type I, 8 (8%) had HAE type II and 12 (12%) patients had FXII-HAE. Fifty-one (51%) patients had experienced at least one time the call center during the follow-up. Nine over 166 (5%) attacks for 9 different patients resulted in hospital admission to the hospital (in the short-stay unit, ie, <24 h) during the follow-up period. During 2 years, there were 166 calls to call center for 166 attacks. All attacks were treated at home after call center contact. CONCLUSIONS: Use of emergency departments and hospitalizations are reduced by the use of a coordinated national call center in HAE after therapeutic education program that promoted self-administration of specific treatment and use of call to call center. TRIAL REGISTRATION: clinicalTrials.gov identifier: NCT01679912.