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.
Asking patients about cardiovascular disease in the family is common practice in both research and clinical risk assessment. But how reliable is this information? Researchers at Karolinska Institutet have investigated this by comparing self-reported family history with Swedish national registers.
The study included just over 25,000 participants from the Swedish SCAPIS cohort. Participants were asked to state whether their parents or siblings had suffered a heart attack, and the information was then compared with diagnoses in the Patient and Cause of Death Registers.
The results 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 per cent, 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 emphasise 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 Agnes Wahrenberg.
Publication
"Validation of self-reported family history of myocardial infarction using nationwide health care data", Wahrenberg, A., Leander, K., Häbel, H. et al. European Journal of Epidemiology, online 16 May 2026, doi:10.1007/s10654-026-01399-x.