title: [Chemistry approach for therapeutic education of children with hemophilia and their parents: Representation of complex phenomena related to treatment].
abstract: BACKGROUND
  The therapeutic management of hemophilia is based on replacement therapy by clotting factor concentrates and may require several injections per week. In teenagers, non-compliance with treatment may be responsible for major orthopedic complications. The aim of this study was to develop and assess an educational intervention for children with hemophilia and their parents, thus illustrating the complex phenomena related to treatment and its adhesion.
  
  
  METHODS
  The construction of the educational workshop and tools was based on the concrete, visual, and playful representation of the following concepts: pathophysiology, the replacement therapy's mechanism of action, drug elimination requiring repeated administrations, and inhibitor development. The procedure was then assessed by a sample of children and parents using a questionnaire.
  
  
  RESULTS
  A 60- to 90-min workshop was developed. The different tools used to illustrate the severity of the disease, the effect of the injected drug, drug elimination, and the inhibitor effect were: a blue-to-transparent colorimetric scale in bottles, a weekly timeline, Muppets, and a slow redox reaction. Five children and eight parents assessed this educational intervention with a rating of 3.75/4 (±0.10) and 3.60/4 (±0.45), respectively.
  
  
  CONCLUSIONS
  The intervention developed could be transposed to other chronic diseases with similar therapeutic characteristics (including replacement mechanism of action and pharmacokinetics). Understanding the transmitted pharmacological concepts in a playful way is a major challenge to encourage treatment adhesion during adolescence.
authors.affiliation: Centre régional de traitement de l'hémophilie de Lyon, hôpital cardiologique Louis-Pradel, groupement hospitalier Est, hospices civils de Lyon, 59, boulevard Pinel, 69500 Bron, France; Équipe d'accueil HESPER 7425, université de Lyon, 69003 Lyon, France. Electronic address: teddy.novais@chu-lyon.fr.
authors.forename: T
authors.initials: T
authors.lastname: Novais
authors.affiliation: Centre régional de traitement de l'hémophilie de Lyon, hôpital cardiologique Louis-Pradel, groupement hospitalier Est, hospices civils de Lyon, 59, boulevard Pinel, 69500 Bron, France.
authors.forename: S
authors.initials: S
authors.lastname: Meunier
authors.affiliation: Centre régional de traitement de l'hémophilie de Lyon, hôpital Hôtel-Dieu, 1, place Alexis-Ricordeau, 44000 Nantes, France.
authors.forename: M
authors.initials: M
authors.lastname: Trossaërt
authors.affiliation: Unité de préparation et contrôle des médicament, service pharmaceutique, plateforme Fripharm, groupement hospitalier Édouard-Herriot, 5, place d'Arsonval, 69003 Lyon, France; UMR 5305 CNRS-UCLB groupe « aspects fondamentaux, cliniques et thérapeutiques de la fonction barrière épithéliale », laboratoire de pharmacie galénique industrielle, institut des sciences pharmaceutiques et biologiques de Lyon, université Claude-Bernard Lyon 1, 8, avenue Rockefeller, 69373 Lyon cedex 08, France.
authors.forename: D
authors.initials: D
authors.lastname: Salmon
authors.affiliation: Centre régional de traitement de l'hémophilie de Lyon, hôpital cardiologique Louis-Pradel, groupement hospitalier Est, hospices civils de Lyon, 59, boulevard Pinel, 69500 Bron, France.
authors.forename: V
authors.initials: V
authors.lastname: Chamouard
mesh_terms: D000293:Adolescent; D001779:Blood Coagulation Factors / Q000627:therapeutic use; D002648:Child; D005169:Factor VIII / Q000627:therapeutic use; D006467:Hemophilia A / Q000628:therapy*; D002836:Hemophilia B / Q000628:therapy*; D006801:Humans; D010290:Parents; D010353:Patient Education as Topic / Q000379:methods*
chemical_list: D001779:Blood Coagulation Factors; D005169:Factor VIII