Validation of myocardial infarction diagnosis in patients with congenital heart disease in Sweden.

BACKGROUND: The 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. METHODS: We 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. RESULTS: We 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. CONCLUSIONS: The 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.

Why do patients participate in long-term cardiovascular trials?--a questionnaire-based study.

INTRODUCTION: Participation in clinical trials by patients with cardiovascular disease is paramount to the development of new treatments. Capturing and keeping patients in the trials until the end is very important and trials are often of long duration and include patients in a clinically stable condition, with few symptoms and a low risk of recurrent disease. We investigated what motivates patients to participate in long-term cardiovascular trials. Increased knowledge may enhance inclusion and retention and minimize lost to follow-up or withdrawal of consent. MATERIALS AND METHODS: A questionnaire with 11 statements to elucidate the reasons for participation and retention in long-term clinical trials was used and replies from 135 participants in trials, 78% men, mean age was 68 years. RESULTS: The two most important reasons for participation were: "I am able to see the same doctor and nurse at the visits", indicated by 89 patients (66%), followed by "I want to promote science", which was indicated by 74 patients (55%). The least important reason was "The visits are free of cost". CONCLUSION: Patients who participate in cardiovascular clinical trials do so because it may provide access to more continuous care but equally important are altruistic motives including a wish to promote science.

Cardiovascular risk factors in adults with coarctation of the aorta.

BACKGROUND: The aging patient with adult congenital heart disease (ACHD) faces the risk of developing atherosclerotic disease. Patients with coarctation of the aorta (CoA) are especially vulnerable because of an inherent high risk of developing hypertension. However, data on the prevalence of other cardiovascular risk factors are scarce. Therefore, this study aimed to describe the prevalence of traditional cardiovascular risk factors (diabetes, hypertension, hyperlipidemia, smoking, obesity, and sedentary lifestyle) in adult patients with CoA. METHODS: Patients with CoA who were registered at the ACHD clinic in Gothenburg were asked to participate in a comprehensive cardiovascular risk assessment. This assessment included a glucose tolerance test, cholesterol profile, ambulatory blood pressure measurements, and a lifestyle questionnaire. RESULTS: A total of 72 patients participated. The median age was 43.5 years and 58.3% were men. Sixty-six (91.7%) patients had ≥one cardiovascular risk factor and 40.3% had ≥three risk factors. Three (4.2%) patients were newly diagnosed with diabetes or impaired glucose tolerance. More than half of the patients had hyperlipidemia (n = 42, 58.3%) and 35 patients (48.6%) were overweight or obese. Only three (4.2%) patients smoked regularly. Of the 60 patients who underwent 24-hour ambulatory blood pressure measurement, 33 (55.0%) were hypertensive. Of the 30 patients with known hypertension only 9 (30.0%) had well-controlled blood pressure on ambulatory blood pressure measurement. CONCLUSIONS: Cardiovascular risk factors among patients with CoA are prevalent. This may indicate a need for more aggressive screening strategies of traditional risk factors to minimize the risk of these patients also developing atherosclerotic disease.