title: The accuracy of self-reported medical history: a preliminary analysis of the promise of internet-based research in Inflammatory Bowel Diseases.
abstract: OBJECTIVE
  Internet-based surveys provide a potentially important tool for Inflammatory Bowel Disease (IBD) research. The advantages include low cost, large numbers of participants, rapid study completion and less extensive infrastructure than traditional methods. The aim was to determine the accuracy of patient self-reporting in internet-based IBD research and identify predictors of greater reliability.
  
  
  METHODS
  197 patients from a tertiary care center answered an online survey concerning personal medical history and an evaluation of disease specific knowledge. Self-reported medical details were compared with data abstracted from medical records. Agreement was assessed by kappa (κ) statistics.
  
  
  RESULTS
  Participants responded correctly with excellent agreement (κ=0.96-0.97) on subtype of IBD and history of surgery. The agreement was also excellent for colectomy (κ=0.88) and small bowel resection (κ=0.91), moderate for abscesses and fistulas (κ=0.60 and 0.63), but poor regarding partial colectomy (κ=0.39). Time since last colonoscopy was self-reported with better agreement (κ=0.84) than disease activity. For disease location/extent, moderate agreements at κ=69% and 64% were observed for patients with Crohn's disease and ulcerative colitis, respectively. Subjects who scored higher than the average in the IBD knowledge assessment were significantly more accurate about disease location than their complementary group (74% vs. 59%, p=0.02).
  
  
  CONCLUSIONS
  This study demonstrates that IBD patients accurately report their medical history regarding type of disease and surgical procedures. More detailed medical information is less reliably reported. Disease knowledge assessment may help in identifying the most accurate individuals and could therefore serve as validity criteria. Internet-based surveys are feasible with high reliability about basic disease features only. However, the participants in this study were engaged at a tertiary center, which potentially leads to a bias and compromises generalization to an unfiltered patient group.
authors.affiliation: Crohn's and Colitis Center, Massachusetts General Hospital, Boston, United States; Department of Medicine, Køge Hospital, Denmark. Electronic address: anne_mette_kelstrup@hotmail.com.
authors.forename: Anne Mette
authors.initials: AM
authors.lastname: Kelstrup
authors.affiliation: Crohn's and Colitis Center, Massachusetts General Hospital, Boston, United States; Clinic for Visceral Surgery and Medicine, Inselspital, Bern University Hospital, Bern, Switzerland.
authors.forename: Pascal
authors.initials: P
authors.lastname: Juillerat
authors.affiliation: Crohn's and Colitis Center, Massachusetts General Hospital, Boston, United States.
authors.forename: Joshua
authors.initials: J
authors.lastname: Korzenik
mesh_terms: D000328:Adult; D000368:Aged; D003082:Colectomy; D003093:Colitis, Ulcerative / Q000175:diagnosis / Q000601:surgery; D003424:Crohn Disease / Q000175:diagnosis / Q000601:surgery; D005240:Feasibility Studies; D005260:Female; D006306:Health Surveys; D006785:Hospitals, University; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis* / Q000601:surgery* / Q000628:therapy; D020407:Internet / Q000592:standards; D008297:Male; D008404:Massachusetts; D008487:Medical History Taking / Q000592:standards; D008499:Medical Records / Q000592:standards; D008875:Middle Aged; D015203:Reproducibility of Results; D057566:Self Report
keywords: Accuracy; Inflammatory Bowel Disease; Internet; Online questionnaire; Self-report; Web-based