le Doré Sophie, Grinda Nathalie, Ferré Emmanuelle, Roussel-Robert Valerie, Frotscher Birgit, Chamouni Pierre, Meunier Sandrine, Bayart Sophie, Dolimier Edita, Truong-Berthoz Francoise, de Raucourt Emmanuelle
Haemophilia Treatment Centre, Hôpital Mignot, Versailles, France.
Regional Hemophilia Centre, Hôpital de Bicêtre (AP-HP), Kremlin-Bicêtre, France.
J Blood Med. 2021 Mar 9;12:133-138. doi: 10.2147/JBM.S280032. eCollection 2021.
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.
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.
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.
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.
血友病性关节病是重度血友病患者的主要并发症。已开发出一种塑料膝关节模型用于对患者进行治疗教育，以促进改善护理管理和自我治疗技能。本研究的目的是评估这种模拟关节积血的人工膝关节（HSAK）对患者疾病及其治疗知识的影响。
在这项观察性研究中，在法国七个血友病治疗中心对重度/中度重度甲型或乙型血友病患者进行个体化教育期间评估了HSAK的影响。参与者提供了书面知情同意书并完成问卷，以评估他们对疾病的了解（分数范围：0 - 7）和对治疗的了解（分数范围：0 - 4）。问卷在使用HSAK之前、之后立即以及使用后6个月完成。比较使用HSAK前后获得的分数。
参与者包括32名儿童、29名青少年和31名成年人。所有年龄组患者在训练后立即，疾病知识平均（标准差）得分从4.5（2.0）显著提高到5.9（1.5；p<0.001），并在6个月时保持不变。治疗知识平均（标准差）得分没有变化，但Wilcoxon符号秩检验显示在训练课程后有显著提高，在儿童和青少年中6个月时仍保持。
这些发现表明，个体化培训课程可以增强所有年龄段患者对血友病的理解，尤其是儿童和青少年，并且HSAK可能有助于改善患者对疾病的管理。
