The accuracy of self-reported medical history: A preliminary analysis of the promise of internet-based research in Inflammatory Bowel Diseases

BACKGROUND AND AIMS: 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). CONCLUSION: 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.

Some results of research in the history of education in England with suggestions for its continuance and extension,

"Read November 25, 1914."--p. [1]

College of Education, Bureau of Research and Service: history, functions, activities.

"Publications by the Bureau of Research and Service, 1947-1949": p. 16. "Publications of the staff of the Bureau of Research and Service, September 1947-July 1950": p. 18-20.

History of the Office of Research Analyses,

Bibliographical footnotes.

Bibliographies in American history : guide to materials for research /

Includes index.

A guide to sources in early modern European military history in Midwestern research libraries /

Published for the Midwest Consortium on Military History: John Crerar Library, Chicago, Illinois; Newberry Library, Chicago, Illinois; University of Chicago; University of Illinois at Urbana-Champaign; Indiana University, Bloomington; University of Iowa, Iowa City; University of Michigan, Ann Arbor; University of Minnesota, Minneapolis; University of Cincinnati; Ohio State University, Columbus.

Ancient cities and empires: their prophetic doom, read in the light of history and modern research.

Mode of access: Internet.

Guide to research in Russian history.

Mode of access: Internet.

A history of walkway slip-resistance research at the National Bureau of Standards /

"Issued December 1979."

The Research Center in Entrepreneurial History at Harvard University, 1948-1958; a historical sketch.

Mode of access: Internet.

Abundance, food habits, and life history aspects of Sacramento squawfish and striped bass at the Red Bluff diversion complex, including the Research Pumping Plant, Sacramento River, California, 1994-1996 : annual report /

"February 1998."

State agricultural experiment stations : a history of research policy and procedure /

Maps on lining papers.