The Hemarthrosis-Simulating Knee Model: A Useful Tool for Individualized Education in Patients with Hemophilia (GEFACET Study)

Abstract

Sophie le Doré,1 Nathalie Grinda,2 Emmanuelle Ferré,1 Valerie Roussel-Robert,3 Birgit Frotscher,4 Pierre Chamouni,5 Sandrine Meunier,6 Sophie Bayart,7 Edita Dolimier,8 Francoise Truong-Berthoz,9 Emmanuelle de Raucourt1 1Haemophilia Treatment Centre, Hôpital Mignot, Versailles, France; 2Regional Hemophilia Centre, Hôpital de Bicêtre (AP-HP), Kremlin-Bicêtre, France; 3Regional Hemophilia Treatment, Hôpital Cochin (AP-HP) Centre, Paris, France; 4Haemophilia Treatment Centre, Hôpital de Brabois, Vandoeuvre-Les-Nancy, France; 5Regional Hemophilia Treatment Centre, Centre Hospitalier Universitaire de Rouen, Rouen, France; 6Hospices Civils de Lyon – Unité d’Hémostase Clinique, Hôpital Cardiologique Louis Pradel, Bron, France; 7Haemophilia Treatment Centre, Hôpital Pontchaillou, Centre Hospitalier Universitaire de Rennes, Rennes, France; 8Baxalta France SAS, a Takeda Company, Paris, France; 9Baxalta GmbH, a Takeda Company, Zurich, SwitzerlandCorrespondence: Emmanuelle de RaucourtService d’Hématologie Biologique, Clinique des Anticoagulants (CAC), Unité Inserm U 1148, Hôpital Beaujon, Clichy, FranceTel [phone]Fax [phone]Email [email protected]: Hemophilic arthropathy is a major complication in patients with severe hemophilia. A plastic knee model has been developed for the therapeutic education of patients to promote improved care management and self-treatment skills. The objective of this study was to evaluate the impact of this hemarthrosis-simulating artificial knee (HSAK) on patients’ knowledge of their disease and its treatment.Methods: In this observational study, the impact of HSAK was assessed during individualized education in patients with severe/moderately severe hemophilia A or B at seven hemophilia treatment centers in France. Participants provided written informed consent and completed questionnaires to assess knowledge of their disease (score range: 0– 7) and knowledge of their treatment (score range: 0– 4). Questionnaires were completed before, immediately after and 6 months after HSAK use. The scores obtained before and after the use of the HSAK were compared.Results: The participants comprised 32 children, 29 teenagers, and 31 adults. The mean (SD) disease knowledge score increased significantly in all age groups of patients from 4.5 (2.0) to 5.9 (1.5; p< 0.001) immediately after the training and remained unchanged at 6 months. Mean (SD) treatment knowledge scores were unchanged, but Wilcoxon signed rank testing showed a significant increase after the training course that was maintained at 6 months in children and teenagers.Conclusion: These findings suggest that an individualized training course can enhance the understanding of hemophilia in patients of all ages, especially in children and teenagers, and that the HSAK may assist in improving patients’ management of their disease.Keywords: hemarthrosis, hemophilia, knee joint, patient education as topic, therapeutic education

Keywords

• hemarthrosis
• hemophilia
• knee joint
• patient education as topic
• therapeutic education