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Scientific Frontline: Extended "At a Glance" Summary: Self-Reported Family History and Myocardial Infarction
The Core Concept: Relying on patient questionnaires to determine a family history of heart attacks significantly underestimates the actual occurrence of these events among close relatives.
Key Distinction/Mechanism: By cross-referencing self-reported survey data from over 25,000 individuals against official Swedish national registers, researchers found a sensitivity of only 57.6%, indicating that early-life heart attacks in particular are frequently misreported or forgotten by family members.
Major Frameworks/Components:
- SCAPIS Cohort: A population study supplying the self-reported health survey data from over 25,000 participants.
- Swedish National Registers: The utilization of the Patient Register and Cause of Death Register to provide objective medical data for validation.
- Clinical Risk Assessment: The standard medical practice of utilizing family disease history to estimate an individual's hereditary risk for cardiovascular events.
Branch of Science: Epidemiology, Cardiology, and Public Health
Future Application: The findings advocate for the integration of national health registry data to supplement and validate self-reported family histories in large-scale cohort research and future clinical risk assessment models.
Why It Matters: Accurate identification of hereditary cardiovascular disease is crucial for preventive care; understanding the limitations of self-reporting allows clinicians to better assess risk while acknowledging that registry data provides a necessary, comprehensive complement to traditional patient interviews.
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 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, a researcher at the Department of Clinical Research and Education and a resident physician at Södersjukhuset. The study forms part of her doctoral thesis.
For heart attacks in close relatives, the sensitivity was 57.6 percent, meaning that many cases identified in the registers were not reported in the questionnaires. Misreporting was more common for cases of heart attacks 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, an associate professor at the same department and a 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 Agnes Wahrenberg.
Published in journal: European Journal of Epidemiology
Authors: Agnes Wahrenberg, Karin Leander, Henrike Häbel, Patrik K. E. Magnusson, Ralf Kuja-Halkola, Göran Bergström, Lars Lind, Emil Hagström, Gunnar Engström, Tomas Jernberg, Stefan Söderberg, Carl Johan Östgren, and Per Svensson
Source/Credit: Karolinska Institutet
Edited by: Scientific Frontline
Reference Number: epi052026_01