Chemistry approach for therapeutic education of children with hemophilia and their parents: Representation of complex phenomena related to treatment

• Published in: Archives de pédiatrie : organe officiel de la Société française de pédiatrie 2016-08, Vol.23 (8), p.798-805
• Main Authors: Novais, T, Meunier, S, Trossaërt, M, Salmon, D, Chamouard, V
• Format: Article
• Language: fre
• Subjects: Adolescent; Blood Coagulation Factors - therapeutic use; Child; Factor VIII - therapeutic use; Hemophilia A - therapy; Hemophilia B - therapy; Humans; Parents; Patient Education as Topic - methods
• ISSN: 1769-664X
• DOI: 10.1016/j.arcped.2016.05.017

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. 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. 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. 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.