多发性硬化症患者的自我报告是医疗保健提供者的疾病修饰疗法和多发性硬化症类型数据的适当替代品
Mina Stanikić1, Julia Braun2, Vladeta Ajdacic-Gross2
1Epidemiology, Biostatistics and Prevention Institute, University of Zurich (UZH), Zurich, Switzerland; Institute for Implementation Science in Health Care, University of Zurich (UZH), Zurich, Switzerland.
Multiple sclerosis and related disorders
|November 4, 2024
概括
在患有多发性硬化症 (pwMS) 的人群中,自我报告的疾病修饰疗法 (DMT) 使用是可靠和有效的. 然而,自我报告的多发性硬化症 (MS) 类型显示出相当或中等的一致性,突出了潜在的研究局限性.
科学领域:
- 神经学 神经学
- 流行病学 流行病学
- 医疗保健服务研究 医疗服务研究
背景情况:
- 自我报告具有成本效益,但容易产生偏见.
- 关于多发性硬化症 (pwMS) 患者的自我报告质量存在有限的数据,特别是在新的疾病修饰疗法 (DMT) 时.
- 本研究评估了在瑞士多发性硬化病注册表 (SMSR) 中自我报告的DMT使用和多发性硬化症 (MS) 类型的准确性.
研究的目的:
- 评估自报告的DMT使用和MS类型在 pwMS中的可靠性和有效性.
- 将自我报告的数据与官方退款批准请求进行比较.
- 识别影响自我报告数据不一致的因素.
主要方法:
- 通过使用保护隐私的方法,将SMSR的自我报告数据与退款批准数据联系起来.
- 分析了基线和后续调查数据,与相应的报销数据进行比较.
- 使用Cohen的kappa评估协议和使用退款批准作为参考标准的准确性.
- 采用后勤回归来识别与不一致相关的因素.
主要成果:
- 对于自我报告的DMT使用,几乎完全一致 (κ=0.87),准确度高 (≥0.80).
- 对于自我报告的MS类型,公平和中等的一致性 (κ=0.37-0.61),准确度不同.
- 年龄,教育和瑞士国籍与报告的MS类型和DMT使用的不一致性有关.
结论:
- 在pwMS中自我报告的DMT使用是可靠和有效的数据来源.
- 自我报告的MS类型在准确性上有局限性,可能是由于诊断的复杂性.
- 自我报告可以成为基于人口的MS研究中医疗保健数据的合适替代品.
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