Dataset Information

The validity of dementia diagnoses in routinely collected electronic health records in the United Kingdom: A systematic review.

ABSTRACT:

Purpose

The purpose of the study is to assess the validity of codes or algorithms used to identify dementia in UK electronic health record (EHR) primary care and hospitalisation databases.

Methods

Relevant studies were identified by searching the MEDLINE/EMBASE databases from inception to June 2018, hand-searching reference lists, and consulting experts. The search strategy included synonyms for "Dementia", "Europe", and "EHR". Studies were included if they validated dementia diagnoses in UK primary care or hospitalisation databases, irrespective of validation method used. The Quality Assessment for Diagnostic Accuracy Studies-2 (QUADAS-2) tool was used to assess risk of bias.

Results

From 1469 unique records, 14 relevant studies were included. Thirteen validated individual diagnoses against a reference standard, reporting high estimates of validity. Most reported only the positive predictive value (PPV), with estimates ranging between 0.09 and 1.0 and 0.62 and 0.85 in primary care and hospitalisation databases, respectively. One study performed a rate comparison, indicating good generalisability of dementia diagnoses in The Health Improvement Network (THIN) database to the UK population. Studies were of low methodological quality. As studies were not comparable, no summary validity estimates were produced.

Conclusion

While heterogenous across studies, reported validity estimates were generally high. However, the credibility of these estimates is limited by the methodological quality of studies, primarily resulting from insufficient blinding of researchers interpreting the reference test. Inadequate reporting, particularly of the specific codes validated, hindered comparison of estimates across studies. Future validation studies should make use of more robust reference tests, follow established reporting guidelines, and calculate all measures of validity.

SUBMITTER: McGuinness LA

PROVIDER: S-EPMC6519035 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

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Publications

The validity of dementia diagnoses in routinely collected electronic health records in the United Kingdom: A systematic review.

McGuinness Luke A LA Warren-Gash Charlotte C Moorhouse Louisa R LR Thomas Sara L SL

Pharmacoepidemiology and drug safety 20190122 2

<h4>Purpose</h4>The purpose of the study is to assess the validity of codes or algorithms used to identify dementia in UK electronic health record (EHR) primary care and hospitalisation databases.<h4>Methods</h4>Relevant studies were identified by searching the MEDLINE/EMBASE databases from inception to June 2018, hand-searching reference lists, and consulting experts. The search strategy included synonyms for "Dementia", "Europe", and "EHR". Studies were included if they validated dementia diag ...[more]

PMID: 30667114

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Project description:BackgroundEpidemiological research on small cell lung cancer (SCLC) is limited and based on cancer registry data. We evaluated the feasibility and validity of using primary care electronic health records (The Health Improvement Network [THIN]) in the UK to identify and characterise SCLC.MethodsWe searched THIN records of individuals aged 18-89 years between 2000 and 2014 for a first diagnostic code suggestive of lung cancer (group 1) or small cell cancer (SCC; group 2) and for text strings among free text comments to identify and characterise incident SCLC cases. We validated our case identification strategy by manual review of patient EHRs, including free text comments, for a random sample of 400 individuals initially detected with a diagnostic code (300 from group 1 and 100 from group 2).ResultsTwenty five thousand two hundred fourty one individuals had a code for lung cancer (n = 24,508 [97.1%]) or SCC (733 [2.9%]). Following free-text searches, there were 3530 incident SCLC cases (2956 from group 1; 574 from group 2) corresponding to an incidence rate of 1.01 per 10,000 person-years. In the validation exercise, SCLC confirmation rates were 99% (group 1) and 85% (group 2). Mean age at diagnosis among confirmed cases was 68.5 years; staging information was present in 63.5% of cases of whom 17.8% had limited disease and 82.2% had extensive disease. The majority (84.5%) had a recorded symptom suggestive of lung cancer; chest infection was the most common (18%) followed by cough (15.8%) and chest/abdominal/back pain (15.2%). The first year crude mortality rates was 9.9 per 100 person-months (95% confidence interval [CI] 9.5-10.4), was higher among men and those aged 80 years and above. A total of 144 (37.8%) confirmed cases had metastases recorded. Median survival among the whole study cohort was 7.37 months.ConclusionsOur SCLC case identification method appears to be valid and could potentially be adapted to identify other cancer types. However, complete characterisation of staging requires information from additional data sources including cancer registries.

Dataset Information

The validity of dementia diagnoses in routinely collected electronic health records in the United Kingdom: A systematic review.

Purpose

Methods

Results

Conclusion

Publications

The validity of dementia diagnoses in routinely collected electronic health records in the United Kingdom: A systematic review.

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