Wiegersma Sytske, Flinterman Linda E, Seghieri Chiara, Baldini Chiara, Paget John, Barrio Cortés Jaime, Verheij Robert A
Netherlands Institute for Health Services Research (NIVEL) Utrecht The Netherlands.
Institute of Management Sant'Anna School of Advanced Studies Pisa Italy.
Learn Health Syst. 2020 Sep 8;4(4):e10242. doi: 10.1002/lrh2.10242. eCollection 2020 Oct.
This study is part of the EU-funded project HarmonicSS, aimed at improving the treatment and diagnosis of primary Sjögren's syndrome (pSS). pSS is an underdiagnosed, long-term autoimmune disease that affects particularly salivary and lachrymal glands.
We assessed the usability of routinely recorded primary care and hospital claims data for the identification and validation of patients with complex diseases such as pSS.
pSS patients were identified in primary care by translating the formal inclusion and exclusion criteria for pSS into a patient selection algorithm using data from Nivel Primary Care Database (PCD), covering 10% of the Dutch population between 2006 and 2017. As part of a validation exercise, the pSS patients found by the algorithm were compared to Diagnosis Related Groups (DRG) recorded in the national hospital insurance claims database (DIS) between 2013 and 2017.
International Classification of Primary Care (ICPC) coded general practitioner (GP) contacts combined with the mention of "Sjögren" in the disease episode titles, were found to best translate the formal classification criteria to a selection algorithm for pSS. A total of 1462 possible pSS patients were identified in primary care (mean prevalence 0.7‰, against 0.61‰ reported globally). The DIS contained 208 545 patients with a Sjögren related DRG or ICD10 code (prevalence 2017: 2.73‰). A total of 2 577 577 patients from Nivel PCD were linked to the DIS database. A total of 716 of the linked pSS patients (55.3%) were confirmed based on the DIS.
Our study finds that GP electronic health records (EHRs) lack the granular information needed to apply the formal diagnostic criteria for pSS. The developed algorithm resulted in a patient selection that approximates the expected prevalence and characteristics, although only slightly over half of the patients were confirmed using the DIS. Without more detailed diagnostic information, the fitness for purpose of routine EHR data for patient identification and validation could not be determined.
本研究是欧盟资助项目HarmonicSS的一部分，旨在改善原发性干燥综合征（pSS）的治疗和诊断。pSS是一种诊断不足的长期自身免疫性疾病，主要影响唾液腺和泪腺。
我们评估了常规记录的初级保健和医院理赔数据在识别和验证pSS等复杂疾病患者方面的可用性。
通过使用Nivel初级保健数据库（PCD）的数据，将pSS的正式纳入和排除标准转化为患者选择算法，在初级保健中识别pSS患者，该数据库涵盖了2006年至2017年10%的荷兰人口。作为验证工作的一部分，将算法识别出的pSS患者与2013年至2017年国家医院保险理赔数据库（DIS）中记录的诊断相关分组（DRG）进行比较。
发现国际初级保健分类（ICPC）编码的全科医生（GP）接触记录，再加上疾病发作标题中提及“Sjögren”，最能将正式分类标准转化为pSS的选择算法。在初级保健中总共识别出1462例可能的pSS患者（平均患病率0.7‰，而全球报告的患病率为0.61‰）。DIS包含208545例患有与干燥综合征相关的DRG或ICD10编码的患者（2017年患病率：2.73‰）。Nivel PCD的总共2577577例患者与DIS数据库建立了关联。基于DIS，总共716例关联的pSS患者（55.3%）得到了确认。
我们的研究发现，GP电子健康记录（EHR）缺乏应用pSS正式诊断标准所需的详细信息。所开发的算法得出的患者选择结果接近预期的患病率和特征，尽管使用DIS仅确认了略超过一半的患者。如果没有更详细的诊断信息，就无法确定常规EHR数据用于患者识别和验证的适用性。
