PLoS ONE (Jan 2019)

Accuracy of self-reported history of autoimmune disease: A pilot study.

  • Julia A O'Rourke,
  • Caitlin Ravichandran,
  • Yamini J Howe,
  • Jennifer E Mullett,
  • Christopher J Keary,
  • Sara B Golas,
  • Amrita R Hureau,
  • Morgan McCormick,
  • Jeanhee Chung,
  • Noel R Rose,
  • Christopher J McDougle

DOI
https://doi.org/10.1371/journal.pone.0216526
Journal volume & issue
Vol. 14, no. 5
p. e0216526

Abstract

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Research associating the increased prevalence of familial autoimmunity with neuropsychiatric disorders is reliant upon the ascertainment of history of autoimmune diseases from relatives. To characterize the accuracy of self-report, we compared self-reported diagnoses of 18 autoimmune diseases using an online self-report questionnaire to the electronic medical record (EMR) diagnoses in 1,013 adult (age 18-70 years) patients of a primary care clinic. For the 11 diseases meeting our threshold observed prevalence, we estimated sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) for self-reported diagnoses under the assumption that EMR-based diagnoses were accurate. Six diseases out of 11 had either sensitivity or PPV below 50%, with the lowest PPV for dermatological and endocrinological diseases. Common errors included incorrectly self-reporting type 2 diabetes mellitus (DM), when type 1 DM was indicated by the EMR, and reporting rheumatoid arthritis when osteoarthritis was indicated by the EMR. Results suggest that ascertainment of familial autoimmunity through self-report contributes to inconsistencies and inaccuracies in studies of autoimmune disease history and that future studies would benefit from incorporating EMR review and biological measures.