Validation of an internet-based cohort of inflammatory bowel disease (CCFA partners)

• Published in: Inflammatory bowel diseases 2014-03, Vol.20 (3), p.541-544
• Main Authors: Randell, Rachel L, Long, Millie D, Cook, Suzanne F, Wrennall, Christina E D, Chen, Wenli, Martin, Christopher F, Anton, Kristen, Sandler, Robert S, Kappelman, Michael D
• Format: Article
• Language: English
• Subjects: Adult; Biomedical Research; Cohort Studies; Colitis, Ulcerative - prevention & control; Crohn Disease - prevention & control; Feasibility Studies; Female; Follow-Up Studies; Health Surveys; Humans; Internet; Male; Middle Aged; Prognosis; Self Report
• ISSN: 1078-0998; 1536-4844
• DOI: 10.1097/01.MIB.0000441348.32570.34

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. 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. 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. 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.