多发性硬化症患者个人健康记录的可行性和可用性:一项为期2年的评估研究
Liselot N van den Berg1,2, Jiska J Aardoom1,2, Léone E Kiveron1,2
1Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands.
Frontiers in human neuroscience
|June 6, 2024
概括
个人健康记录 (PHR) 显示出多发性硬化症 (MS) 自主管理的潜力,但面临实施挑战. 低采用率和可用性问题凸显了优化设计和支持的需要,以改善患者参与和结果.
科学领域:
- 数字健康数字健康
- 慢性疾病管理 慢性疾病管理
- 医疗信息学 医疗信息学
背景情况:
- 多发性硬化症 (MS) 在全球影响280万,需要有效的自我管理策略.
- 个人健康记录 (PHR) 提供了一个有前途的途径,可以提高患者参与度和在MS等慢性疾病中的治疗坚持.
- 尽管有潜在的好处,但PHR实施面临着持续的挑战,这表明需要进一步开发和评估.
研究的目的:
- 在多发性硬化症 (MS) 自主管理的背景下,评估个人健康记录 (PHR) 系统的可行性和可用性.
- 确定实施决定因素,包括促进者和障碍,影响患者和医疗保健专业人员 (HCP) 采用PHR.
- 探索PHR使用对护理质量,自我管理,自我效能,工作满意度,效率,成本和与健康相关的生活质量的初步影响.
主要方法:
- 一项混合方法的研究,涉及80名患者和12名医疗保健专业人员 (HCP) 在两年内.
- 在基线,一年和两年内通过问卷收集的定量数据.
- 通过专注小组采访患者和医疗保健人员收集的定性数据,以探索可用性和实施因素.
主要成果:
- 患者和医疗保健工作者与PHR的参与度较低,以不频繁的登录和短暂的会话持续时间为特征.
- 患者的可用性和适度满意度得分低于平均水平,在医疗保健人员中观察到类似的趋势.
- 确定的障碍包括知识不足,员工能力不足和ICT障碍,同时还指出了与改善健康洞察力相关的感知效益.
结论:
- PHR的可行性和可用性被评为中等,观察到潜在的但重大实施挑战影响了采用.
- 使用的复杂性和技术问题阻碍了PHR的采用,强调需要持续评估和调整.
- 建议进行参与式设计和专门的实施团队,以优化PHR潜力并加强采用,以改善慢性疾病自我管理.
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