患者偏好和手机应用在血友病A中的使用:东欧的横截面调查
Laszlo Nemes1, Helga Hartmann2, Hrvojka Kostelac3
1National Haemophilia Center and Haemostasis Department, Center Hospital of Northern Pest - Military Hospital, Budapest, Hungary.
Journal of patient experience
|July 23, 2025
概括
患有血友病A的患者使用移动应用程序进行因子VIII (FVIII) 预防,通过药理动力学 (PK) 概况个性化治疗. 虽然应用程序是有用的,但需要改进,以改善患者和医生的互动和用户体验.
科学领域:
- 血液学 血液学 血液学
- 数字健康数字健康
- 药理动力学 药理动力学
背景情况:
- 血友病A是一种由于因子VIII (FVIII) 缺乏而导致的出血障碍.
- 预防FVIII是一种常见的治疗方法,通常使用药理动力学 (PK) 概况进行个性化治疗.
- 移动应用程序提供了一个工具,用于创建个别的PK配置文件,以指导预防.
研究的目的:
- 评估使用移动应用程序在血友病A患者的PK导向预防中的使用情况.
- 探索跨年龄组的患者偏好和记录方法 (应用程序与纸质日记) 的使用模式.
- 确定血友病A管理的移动应用程序设计的改进领域.
主要方法:
- 在2022年5月至9月期间进行了一项横截面调查.
- 参与者包括来自保加利亚,捷克,匈牙利,立陶宛和罗马尼亚的A型血友病患者.
- 收集的数据包括人口统计,文档偏好,使用模式和用户满意度.
主要成果:
- 在84名参与者中,有40.5%的人只使用移动应用程序或纸质日记.
- 捷克的应用使用率最高 (94.1%),其次是罗马尼亚 (50.0%).
- 84.2%的应用用户感到满意,但建议改进,例如更好的药物跟踪和智能手表兼容性;没有发现年龄相关性.
结论:
- 移动应用程序被认为是对血友病A的预防有用的.
- 需要改进,以改善患者与医生的互动和用户体验.
- 进一步的开发可以优化数字工具,以提供个性化的血友病护理.
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