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Copyright ©2005 Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Dec 7, 2005; 11(45): 7152-7158
Published online Dec 7, 2005. doi: 10.3748/wjg.v11.i45.7152
Internet-based data inclusion in a population-based European collaborative follow-up study of inflammatory bowel disease patients: Description of methods used and analysis of factors influencing response rates
Frank L Wolters, Gilbert van Zeijl, Jildou Sijbrandij, Frederik Wessels, Colm O’Morain, Charles Limonard, Maurice G Russel, Reinhold W Stockbrügger
Frank L Wolters, Reinhold W Stockbrügger, Department of Gastroenterology and Hepatology, University Hospital Maastricht, P. Debyeplein 25, 6202 AZ Maastricht, The Netherlands
Gilbert van Zeijl, Jildou Sijbrandij, Charles Limonard, MEMIC, Centre for Data and Information Management, P. Debyeplein 1, 6229 HA Maastricht, The Netherlands
Frederik Wessels, Global Vitis, Wattstraat 52, 2171 TR Sassenheim, The Netherlands
Colm O’Morain, Adelaide and Meath Hospital, Department of Gastroenterology, Trinity College, Tallaght, SE-41345 Dublin 24, Ireland
Maurice G Russel, Department of Gastroenterology and Hepatology, Medisch Spectrum Twente, Haaksbergerstraat 55, 7513 ER Enschede, The Netherlands
Author contributions: All authors contributed equally to the work.
Supported by the European Commission as a fifth framework shared cost action (QLG4-CT-2000-01414)
Correspondence to: Dr FL Wolters, Department of Gastroenterology and Hepatology, PO box 5800, 6202 AZ Maastricht, The Netherlands. frankwolters@ace-on-air.nl
Telephone: +31-43-3875021
Received: January 13, 2005
Revised: February 15, 2005
Accepted: February 18, 2005
Published online: December 7, 2005

AIM: To describe an Internet-based data acquisition facility for a European 10-year clinical follow-up study project of a population-based cohort of inflammatory bowel disease (IBD) patients and to investigate the influence of demographic and disease related patient characteristics on response rates.

METHODS: Thirteen years ago, the European Collaborative study group of IBD (EC-IBD) initiated a population-based prospective inception cohort of 2 201 uniformly diagnosed IBD patients within 20 well-described geographical areas in 11 European countries and Israel. For the 10-year follow-up of this cohort, an electronic patient questionnaire (ePQ) and electronic physician per patient follow-up form (ePpPFU) were designed as two separate data collecting instruments and made available through an Internet-based website. Independent demographic and clinical determinants of ePQ participation were analyzed using multivariate logistic regression.

RESULTS: In 958 (316 CD and 642 UC) out of a total number of 1 505 (64%) available IBD patients, originating from 13 participating centers from nine different countries, both ePQ and ePpPFU were completed. Patients older than 40 years at ePQ completion (OR: 1.53 (95%CI: 1.14-2.05)) and those with active disease during the 3 mo previous to ePQ completion (OR: 3.32 (95%CI: 1.57-7.03)) were significantly more likely to respond.

CONCLUSION: An Internet-based data acquisition tool appeared successful in sustaining a unique Western-European and Israelian multi-center 10-year clinical follow-up study project in patients afflicted with IBD.

Keywords: Internet, Questionnaire, IBD, Cohort study, Population-based