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Validation of self-reported family history of myocardial infarction using nationwide health care data

Wahrenberg, Agnes ; Leander, Karin ; Häbel, Henrike ; Magnusson, Patrik K.E. ; Kuja-Halkola, Ralf ; Bergström, Göran ; Lind, Lars ; Hagström, Emil ; Engström, Gunnar LU and Jernberg, Tomas , et al. (2026) In European Journal of Epidemiology 41(6). p.765-773
Abstract

Self-reported family history of myocardial infarction (MI) is frequently used to assess cardiovascular risk. However, validation of self-reported family history has often been limited to small samples, and to death-certificates or self-reported medical history as reference. This study investigated the accuracy of self-reported family history of MI in a population-based cohort, using register data as reference. We included 25,302 participants from the Swedish CArdioPulmonary bioImage Study (SCAPIS) with sufficient register coverage. Self-reported family history of MI in parents and siblings was obtained from the SCAPIS questionnaire. Relatives were identified in the Swedish Multi-Generation Register and occurrences of MI were retrieved... (More)

Self-reported family history of myocardial infarction (MI) is frequently used to assess cardiovascular risk. However, validation of self-reported family history has often been limited to small samples, and to death-certificates or self-reported medical history as reference. This study investigated the accuracy of self-reported family history of MI in a population-based cohort, using register data as reference. We included 25,302 participants from the Swedish CArdioPulmonary bioImage Study (SCAPIS) with sufficient register coverage. Self-reported family history of MI in parents and siblings was obtained from the SCAPIS questionnaire. Relatives were identified in the Swedish Multi-Generation Register and occurrences of MI were retrieved from the Swedish National Patient Register and Cause of Death Register. Cohen’s κ, sensitivity, specificity, and predictive values for self-reports were calculated using register-derived diagnoses as reference. The mean age of participants was 57.5 years. The overall agreement of self-reported and register-verified family history was moderate. Reporting family history of MI in any parent or sibling yielded a κ of 0.491, a sensitivity of 57.6% and a specificity of 89.0%. The positive and negative predictive values were 73.9 and 79.6%, respectively. The accuracy of reported maternal and paternal MI were similar, however, reports of early-onset disease showed lower overall κ. Male participants consistently reported family history less accurately than females, and participants with a university degree reported family history more accurately than those without a university education. Compared with register data, self-reported family history of MI underestimates the prevalence of, especially early-onset, MI in close relatives.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Cardiovascular risk, Family history, Medical history taking, Myocardial infarction
in
European Journal of Epidemiology
volume
41
issue
6
pages
9 pages
publisher
Springer
external identifiers
  • scopus:105039442179
  • pmid:42142221
ISSN
0393-2990
DOI
10.1007/s10654-026-01399-x
language
English
LU publication?
yes
id
7901b375-1e1e-4afc-8ecd-55f076257155
date added to LUP
2026-08-17 09:06:58
date last changed
2026-08-31 10:01:05
@article{7901b375-1e1e-4afc-8ecd-55f076257155,
  abstract     = {{<p>Self-reported family history of myocardial infarction (MI) is frequently used to assess cardiovascular risk. However, validation of self-reported family history has often been limited to small samples, and to death-certificates or self-reported medical history as reference. This study investigated the accuracy of self-reported family history of MI in a population-based cohort, using register data as reference. We included 25,302 participants from the Swedish CArdioPulmonary bioImage Study (SCAPIS) with sufficient register coverage. Self-reported family history of MI in parents and siblings was obtained from the SCAPIS questionnaire. Relatives were identified in the Swedish Multi-Generation Register and occurrences of MI were retrieved from the Swedish National Patient Register and Cause of Death Register. Cohen’s κ, sensitivity, specificity, and predictive values for self-reports were calculated using register-derived diagnoses as reference. The mean age of participants was 57.5 years. The overall agreement of self-reported and register-verified family history was moderate. Reporting family history of MI in any parent or sibling yielded a κ of 0.491, a sensitivity of 57.6% and a specificity of 89.0%. The positive and negative predictive values were 73.9 and 79.6%, respectively. The accuracy of reported maternal and paternal MI were similar, however, reports of early-onset disease showed lower overall κ. Male participants consistently reported family history less accurately than females, and participants with a university degree reported family history more accurately than those without a university education. Compared with register data, self-reported family history of MI underestimates the prevalence of, especially early-onset, MI in close relatives.</p>}},
  author       = {{Wahrenberg, Agnes and Leander, Karin and Häbel, Henrike and Magnusson, Patrik K.E. and Kuja-Halkola, Ralf and Bergström, Göran and Lind, Lars and Hagström, Emil and Engström, Gunnar and Jernberg, Tomas and Söderberg, Stefan and Östgren, Carl Johan and Svensson, Per}},
  issn         = {{0393-2990}},
  keywords     = {{Cardiovascular risk; Family history; Medical history taking; Myocardial infarction}},
  language     = {{eng}},
  number       = {{6}},
  pages        = {{765--773}},
  publisher    = {{Springer}},
  series       = {{European Journal of Epidemiology}},
  title        = {{Validation of self-reported family history of myocardial infarction using nationwide health care data}},
  url          = {{http://dx.doi.org/10.1007/s10654-026-01399-x}},
  doi          = {{10.1007/s10654-026-01399-x}},
  volume       = {{41}},
  year         = {{2026}},
}