Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.
Department of Biomedical and Clinical Sciences, Faculty of Medicine and Health Sciences, Linköping University, Sweden.
Acta Neurol Scand. 2021 Dec;144(6):680-686. doi: 10.1111/ane.13514. Epub 2021 Aug 6.
Multiple sclerosis (MS) is a chronic neurodegenerative disease of the central nervous system. Identifying MS at the population level is important for disease surveillance and allocation of resources. The Swedish National Patient Registry (NPR) has been used to study the epidemiology of MS, but the accuracy of this resource is not known. We aimed to validate a definition of MS using the Swedish NPR in Värmland County using a longitudinal cohort design.
Data were extracted from the NPR, the Total Population Register, the Swedish MS Register, and medical records for the years 2001-2013. Fifteen algorithms of hospitalizations and clinic visits for MS were developed and compared with findings in medical records, which acted as the "gold standard" definition. Sensitivity, specificity, and positive and negative predictive values (PPV, NPV) were estimated.
Of 805 eligible persons identified in the NPR, 763 had MS (94.8%) according to medical records. Of these, 544 (71.3%) were also registered in the SMSreg. The case definition that had a well-balanced sensitivity and specificity required three or more clinic or hospital visits for MS (sensitivity of 85.3% (95% CI: 82.6-87.8) and specificity of 81.0% (95%CI: 65.9-91.4).
Multiple case definitions with high sensitivity and moderate specificity were found, suggesting that the NPR can be used to accurately identify persons with MS.
多发性硬化症（MS）是一种中枢神经系统的慢性退行性疾病。在人群中发现 MS 对于疾病监测和资源分配非常重要。瑞典国家患者登记处（NPR）已被用于研究 MS 的流行病学，但该资源的准确性尚不清楚。我们旨在使用纵向队列设计，通过验证在瓦尔米和拉恩兰省使用瑞典 NPR 定义 MS。
数据来自 NPR、总人口登记册、瑞典 MS 登记册和 2001-2013 年的医疗记录。开发了 15 种用于 MS 住院和就诊的算法，并与医疗记录中的发现进行了比较，后者作为“金标准”定义。估计了敏感性、特异性、阳性和阴性预测值（PPV、NPV）。
在 NPR 中确定的 805 名合格人员中，根据医疗记录，有 763 人患有 MS（94.8%）。其中，544 人（71.3%）也在 SMSreg 中登记。具有平衡敏感性和特异性的病例定义需要进行三次或更多次 MS 诊所或住院就诊（敏感性为 85.3%（95%CI：82.6-87.8）和特异性为 81.0%（95%CI：65.9-91.4））。
发现了具有高敏感性和中等特异性的多种病例定义，这表明 NPR 可用于准确识别 MS 患者。
