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Inflammatory Bowel Diseases:
doi: 10.1097/01.MIB.0000441348.32570.34
Original Clinical Articles

Validation of an Internet-Based Cohort of Inflammatory Bowel Disease (CCFA Partners)

Randell, Rachel L. BA*; Long, Millie D. MD, MPH†,‡; Cook, Suzanne F. PhD§; Wrennall, Christina E. D. BA; Chen, Wenli MS, MA; Martin, Christopher F. MSPH†,‡; Anton, Kristen MS†,‖; Sandler, Robert S. MD, MPH†,‡; Kappelman, Michael D. MD, MPH†,‡,¶

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Abstract

Background:

As traditional methods have become increasingly difficult, the Internet offers a mechanism for conducting survey research quickly and efficiently. However, the validity of this research depends on the ability of respondents to accurately report health status. We used a large Internet-based inflammatory bowel disease (IBD) cohort to validate self-reported IBD against physician reports.

Methods:

Between June 22, 2012, and April 01, 2013, all participants of CCFA Partners (n = 6681) were invited to participate, and 450 were selected by random stratified sampling. We sent physicians a survey to confirm IBD diagnosis and characteristics. We used descriptive statistics to compare data.

Results:

A total of 4423 participants (66%) indicated interest. Of 450 selected, 261 (58%) consented, and physician reports were obtained for 184 (71%). Physicians confirmed IBD status in 178 (97%) and type in 171 (97% of confirmed). The matching between patient and physician reports for Crohn's disease (CD) was 82% for disease location, 89% for the presence of perianal disease, and 46% for disease behavior. For ulcerative colitis (UC), disease location matched 54% of the time. Physician reports confirmed the status of ever having bowel surgery for 97% of CD and 94% for UC and confirmed current pouch or ostomy in 84% of CD and 81% of UC.

Conclusions:

Self-reported IBD in CCFA Partners is highly accurate, and participants are willing to release medical records for research. Self-reported phenotypic characteristics were less valid. The validity of IBD diagnoses among the participants of CCFA Partners supports the use of this cohort for patient-centered outcome research.

Copyright © 2014 Crohn's & Colitis Foundation of America, Inc.

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