QUALITY-OF-LIFE RESEARCH ON THE INTERNET - FEASIBILITY AND POTENTIAL BIASES IN PATIENTS WITH ULCERATIVE-COLITIS

Objective: The World Wide Web (WWW) is a new communications medium tha t permits investigators to contact patients in nonmedical settings and study the effects of disease on quality of life through self-administ ered questionnaires. However, little is known about the feasibility an d, what is more important, the validity of this approach. An on-line s urvey for patients with ulcerative colitis (UC) and patients whose UC had been treated with surgical procedures was developed. To understand how patients on the WWW might differ from those in practice and the p otential biases in conducting epidemiological research in volunteers r ecruited on the Internet, post-surgery patients who responded to the W WW survey were compared with those in a surgical practice. Setting: Th e Internet and private practice surgical clinic. Main outcomes: Scores from the Short form 36 (SF-36) Health Assessment Questionnaire and th e Self-Administered Inflammatory Bowel Disease Questionnaire (IBDQ). R esults: Over a 5-month period, 53 post-surgery patients enrolled in th e Internet study; 47 patients from a surgical clinic completed the sam e computer-based questionnaire. Surgically treated patients on the WWW were younger than their clinic counterparts (median age category 35-4 4 years vs. 45-54 years, p = 0.01) but more ill with a lower summary I BDQ score (168 vs. 186, p = 0.019) and lower health status across almo st all dimensions of the SF-36 (p = 0.016). Conclusions: It is feasibl e to conduct epidemiological research on the effects of UC on quality of life on the Web; however, systematic differences in disease activit y between volunteer patients on the WWW and ''in the clinic'' may Limi t the applicability of results.