Abstract
BackgroundThe population of adults with congenital heart disease (CHD) is growing, and increasingly more patients with CHD reach older ages. Patients with CHD are at an increased risk of myocardial infarction (MI) with increased age. Diagnosing MI in patients with CHD can be challenging in clinical practice owing to a high prevalence of aberrant electrocardiograms, ventricular hypertrophy, and heart failure, among other factors. The National Swedish Patient Register (NPR) is widely used in epidemiological studies; however, MI diagnoses specifically in patients with CHD have never been validated in the NPR.MethodsWe contacted hospitals and medical archive services to request medical records for 249 patients, born during 1970–2012, with both CHD and MI diagnoses and who were randomly selected from the NPR by the Swedish National Board of Health and Welfare. Follow-up was until 2015. We performed a medical chart review to validate the MI diagnoses; we also validated CHD diagnoses to ensure that only patients with confirmed CHD diagnoses were included in the MI validation process.ResultsWe received medical records for 96.4% (n = 238/249) of patients for validation of CHD diagnoses. In total, 74.8% (n = 178/238) had a confirmed CHD diagnosis; of these, 70.2% (n = 167) had a fully correct CHD diagnosis in the NPR; a further 4.6% (n = 11) had a CHD diagnosis, but it was misclassified. MI diagnoses were validated in 167 (93.8%) patients with confirmed CHD. Of the patients with confirmed CHD, 88.0% (n = 147/167) had correct MI diagnoses. Patients with non-complex CHD diagnoses had more correct MI diagnoses than patients with complex CHD (91.0%, n = 131 compared with 69.6%, n = 16). The main cause for incorrect MI diagnoses was typographical error, contributing to 50.0% of the incorrect diagnoses.ConclusionsThe validity of MI diagnoses in patients with confirmed CHD in the NPR is high, with nearly 9 of 10 MI diagnoses being correct (88.0%). MI in patients with CHD can safely be studied using the NPR.
Highlights
The population of adults with congenital heart disease (CHD) is growing, and increasingly more patients with CHD reach older ages
From the data received from the Swedish National Board of Health and Welfare, we identified all patients with a CHD diagnosis (ICD-8: 746–746.99; 747–747.59, International Classification of Disease (ICD)-9: 745A–747E and ICD-10: Q20–Q26 except Q26.5 and Q26.6, which are vena portae anomalies)
Among patients with a CHD diagnosis, we identified all patients with an myocardial infarction (MI) diagnosis (ICD-8 and ICD-9: 410; ICD-10: I21)
Summary
The population of adults with congenital heart disease (CHD) is growing, and increasingly more patients with CHD reach older ages. The National Swedish Patient Register (NPR) is widely used in epidemiological studies; MI diagnoses in patients with CHD have never been validated in the NPR. Patients with CHD are at risk of acquired cardiovascular diseases, such as Fedchenko et al BMC Cardiovasc Disord (2020) 20:460 myocardial infarction (MI) [8,9,10,11]. Healthcare data based on large national administrative registers is increasingly used in many observational studies [8, 12, 15,16,17,18], making it possible to include large patient populations to study a wide range of outcomes in a time-effective and cost-effective manner. A diagnosis of MI has repeatedly been shown to have a high level of validity in the NPR [15, 20]; an MI diagnosis in patients with CHD has not yet been validated in the NPR
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