Quality of life in patients with inflammatory bowel disease and irritable bowel syndrome differs between subjects recruited from clinic or the Internet

INTRODUCTION: The Internet is used increasingly to recruit patients for studies of gastroenterological disorders. The Internet allows access to potentially large study populations but no data exist comparing Internet-based populations with patients recruited from a clinical setting. We conducted an assessment of the quality of life (QOL) in patients with active inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) recruited from a gastroenterology clinic and the Internet. METHODS: Patients were recruited from a university gastroenterology clinic and several condition-specific support group web sites. The diagnosis of IBD and IBS was confirmed for clinic patients while Internet respondents were self-identified. Subjects completed both general (SF-36) and condition specific (IBS-QOL) measures. RESULTS: Subjects with IBD included 47 recruited from clinic and 96 recruited from the Internet. The IBS group included 147 patients recruited from clinic and 84 recruited from the Internet. Both IBS and IBD clinic and Internet IBD groups did not differ by. IBD Internet respondents were more likely to be women (clinic: 28F/19M, online: 80F/16M, P = 0.002) while IBS Internet respondents were more likely to be male (123F/24M) than IBS clinic patients (62F/22M) (P = 0.09). Compared with patients seen in clinic, both IBS and IBD Internet respondents had significantly poorer QOL as measured by both SF-36 and IBS-QOL. The greatest decrements in QOL occurred on SF-36 scales for physical and emotional roles and social functioning. On the IBS-QOL, the greatest decrement was seen on scales for dysphoria and life interference. Significant differences were maintained after controlling for gender. CONCLUSIONS: For both IBS and IBD, Internet-respondents had significantly poorer QOL than subjects recruited from clinic. These data demonstrate that subjects recruited from the Internet may represent a clinically distinct population and data obtained from online surveys may not generalize to broader clinical populations. Further study is needed to determine whether these differences reflect psychosocial characteristics of Internet responders or simply self-report behaviors in a relatively anonymous environment.