The long COVID evidence gap: comparing self-reporting and clinical coding of long COVID using longitudinal study data linked to healthcare records
The long COVID evidence gap: comparing self-reporting and clinical coding of long COVID using longitudinal study data linked to healthcare records
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长期新冠病毒证据缺口：使用与医疗记录相关的纵向研究数据来比较长期新冠病毒的自我报告和临床编码
DOI：
10.1101/2023.02.10.23285717
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发表时间：
2023
期刊：
影响因子：
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通讯作者：
Knuppel A
中科院分区：
文献类型：
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作者：
Knuppel A
“长期COVID”（LC）一词于二零二零年春季由COVID-19后症状持续的个人创造，但直到二零二零年十二月才创建临床代码，以便在电子健康记录（EHR）中记录COVID-19后持续的疾病和转诊。对全人群EHR数据库的分析有助于了解LC的流行病学;但对LC可访问EHR的完整性存在担忧。英国纵向人口研究（LPS）自2020年初收集了有关COVID-19和LC的自我报告数据，并将这些数据存入英国纵向联系合作（UK LLC）研究数据库，在那里它们与参与者的EHR系统地联系起来。LPS报告的LC与记录的LC在同一个人的EHR的比较可能有助于了解新出现的条件，如LC的流行病学。我们使用了来自英国有限责任公司的10个英国LPS的数据，以调查参与者自我报告的LC在10至22个月的随访后是否在其英语EHR中有LC诊断或转诊代码。在6412名有COVID-19症状持续时间数据并与健康记录相关的参与者中，898名（14.0%）在LPS调查中自我报告了任何严重程度的LC。其中，只有42例（4.7%; 95%CI：3.5，6.3）在EHR中被确定为LC相关代码。在报告LC衰弱的个体中，这一比例仅略高（5.6%; 95% CI：3.7，8.3）。我们的数据显示，一个显着的差异之间的LC感知和参与者在LPS和证据记录在他们的EHR的LC之间的差异，这种差异是由种族和可能的指标剥夺模式。自我报告的症状可能不会反映在编码的EHR中，原因包括个人求助行为的变化、临床医生编码实践和适当代码的可用性。然而，这些考虑似乎不可能为观察到的大量报告差异提供完整的解释。这些结果可能表明大量未满足的临床需求，与患者报告的难以获得医疗保健和次优的识别和响应一致，当他们这样做时，他们的疾病。它们也可能表明基于EHR或LPS的LC流行病学研究的潜在缺点，并说明LPS和EHR数据之间的三角测量的价值，并通过英国LLC等资源链接和提供。
The term “long COVID” (LC) was coined in spring 2020 by individuals with ongoing symptoms following COVID-19, but it took until December 2020 for clinical codes to be created in order to record persistent post-COVID-19 illness and referrals within electronic health records (EHRs). Analysis of whole-population EHR databases have helped understand the epidemiology of LC; yet concerns exist about the completeness of accessible EHRs for LC. UK longitudinal population studies (LPS) collected self-reported data on COVID-19 and LC from early 2020 and deposited these data in the UK Longitudinal Linkage Collaboration (UK LLC) research database where they are systematically linked to the participants EHRs. Comparisons of LPS reported LC with recorded LC in the EHRs of the same individuals may be helpful in understanding the epidemiology of emerging conditions such as LC. We used data from 10 UK LPS in the UK LLC to investigate whether participants self-reporting LC had a LC diagnosis or referral code in their English EHR after 10 to 22 months of follow up. Of 6412 participants with COVID-19 symptom duration data and linkage to health records, 898 (14.0%) self-reported LC of any severity in LPS surveys. Among these, just 42 (4.7%; 95% CI: 3.5, 6.3) were identified with LC-related codes in EHRs. In individuals reporting debilitating LC, this proportion was only marginally higher (5.6%; 95% CI: 3.7, 8.3). Our data show a striking discrepancy between LC as perceived and reported by participants in LPS and evidence of LC recorded in their EHRs; and that this discrepancy was patterned by ethnicity and possibly by indicators of deprivation. Self-reported symptoms may not be reflected in coded EHRs due to factors including variations in individuals help seeking behaviours, clinician coding practices and the availability of appropriate codes. However, these considerations appear unlikely to provide a complete explanation for the substantial observed reporting discrepancy. These results may indicate substantial unmet clinical need, in keeping with patient reports of difficulties accessing healthcare and sub-optimal recognition of, and response to, their illness when they do. They may also indicate potential shortcomings of epidemiological research on LC based on EHR- or LPS-based ascertainment alone and illustrate the value of triangulation between LPS and EHR data where linked and made available through resources such as the UK LLC.