Patient knowledge in inflammatory bowel disease: CCKNOW, how much do they know?

Abstract

investigation on a cohort of children diagnosed with IBD between 1989 and 2003 whom were registered in the IBD center at Texas Children's Hospital. Children demographics, including age, sex, and age at diagnosis, were obtained. The diagnosis of IBD was based on clinical, radiological, endoscopic, and histological examinations. Disease distribution was identified on the basis of a review of all endoscopic, colonoscopic, pathological, and radiological records. All of the patients underwent a detailed whole-body examination by a gastroenterologist and rheumatologist. Diagnosis of arthritis was made by the assigned rheumatologist. We identified the date of onset of diagnosis for each IBD and arthritis. Results: There were 420 children diagnosed with IBD between1989-2003, 230 (55%) had CD, 112 (26.5%) had UC and 78 (18.5%) had IC. The prevalence of IBD-related arthritis (IBDA) among the total IBD population was 13%; 17% in CD, 11% ulcerative colitis; 4% IC; p = 0.02). There was no gender effect on IBDA, 52% of the overall patients were girls. The mean age at first diagnosis of IBDA was identical for boys and girls (12.5+3.2). No difference was observed among the three studied ethnic groups, IBDA was found in 11% of African-American children diagnosed with IBD, 12% in Caucasians, and 15% in Hispanics (P=0.2). Arthritis was peripheral in 35 cases (64%), axial in 10 cases (18%), combined peripheral and axial in 8 cases (14.5%) and spondyliothesis in 2 cases (3.5%). In 17 cases (31%), arthritis was diagnosed at a mean 20 (+28.2) months prior to the diagnosis of IBD. The remaining 69% of the arthritis cases were diagnosed after a mean duration of IBD of 28 (+26.5) months. Conclusions: IBDA is a frequent extra-intestinal complication of IBD and usually diagnosed after the IBD onset. Crohn's disease patients have a higher risk to develop IBDA than UC or IC. IBD may share environmental triggers, genetic susceptibilities or alterations in immune homeostasis with arthritis