HMN 2026: How Self-reported family history underestimates heart attacks among close relatives

A new study from Karolinska Institutet shows that people’s own reports of heart attacks in the family only partially correspond with register data. The findings suggest that heart attacks among relatives are often underreported, particularly for events occurring early in life. The results, published in European Journal of Epidemiology, show that the agreement between self-reported data and register data was only moderate.

“Our findings show that data from questionnaires only capture part of the occurrence of heart attacks in families,” says Agnes Wahrenberg, researcher at the Department of Clinical Research and Education and resident physician at Södersjukhuset. The study forms part of her doctoral thesis.

For heart attacks in close relatives, the sensitivity was 57.6%, meaning that many cases identified in the registers were not reported in the questionnaires. Misreporting was more common for cases of heart attack occurring early in life.

At the same time, the study highlights the unique opportunities that Swedish health registers offer for research into hereditary cardiovascular disease.

“These registers can be used to supplement and validate family history information in both large cohorts and future register studies,” says Per Svensson, associate professor at the same department and senior physician at Södersjukhuset.

Despite these limitations, the researchers emphasize that self-reported information remains valuable, as it is easy to obtain and can help identify individuals at increased risk in everyday clinical practice.

“It can be difficult to know exactly which diseases have occurred in relatives, particularly further back in time. The Swedish registers are a unique complement to studies on family history and cardiovascular disease, as they enable a more comprehensive assessment of disease in relatives,” says Wahrenberg.

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