Colorectal Malignancy in a Prospective Irish Inflammatory Bowel Disease Population 15 Years Since Diagnosis: Comparison with the EC-IBD Cohort.

BACKGROUND AND AIM: As part of the EC-IBD prospective inception cohort study, we had unique opportunity to follow up our patients since diagnosis in the early 1990s. PATIENTS AND METHODS: All patients from the greater Dublin area (n = 192) were followed up from inception between 1991 and 1993 until the 30 September 2009. Patients who developed malignancies were logged electronically with verification of the site and histology. RESULTS: Of the initial 192 patients, 133 were included in the 15-year follow-up. Of those, 80 (60.2%) had UC and 53 (39.8%) had CD. There were 82 (61.7%) males and 51 (38.3%) females. Six patients had extraintestinal malignancy; however, there was no CRC related to IBD noted in our cohort. Four of the 6 identified cases had UC (64%) with a mean age of 54.25 years at the time of cancer diagnosis, whereas the two CD patients had a mean age of 51.5 years at the time of cancer diagnosis. CONCLUSION: CRC was not observed in our cohort. The six extraintestinal malignancies did not show significant relation to IBD. The high total colectomy rate (in the prebiological therapy era) may have contributed to low malignancy rate.

Cancer in inflammatory bowel disease 15 years after diagnosis in a population-based European Collaborative follow-up study.

AIM OF THE STUDY: To determine the occurrence of intestinal and extraintestinal cancers in the 1993-2009 prospective European Collaborative Inflammatory Bowel Disease (EC-IBD) Study Group cohort. PATIENTS-METHODS: A physician per patient form was completed for 681 inflammatory bowel disease patients (445UC/236CD) from 9 centers (7 countries) derived from the original EC-IBD cohort. For the 15-year follow up period, rates of detection of intestinal and extraintestinal cancers were computed. RESULTS: Patient follow-up time was fifteen years. In total 62/681 patients (9.1%) [41 with ulcerative colitis/21 with Crohn's disease, 36 males/26 females] were diagnosed with sixty-six cancers (four patients with double cancers). Colorectal cancer was diagnosed in 9/681 patients [1.3%] (1 Crohn's disease and 8 ulcerative colitis). The remaining 53 cancers were extraintestinal. There was a higher prevalence of intestinal cancer in the Northern centers compared to Southern centers [p=NS]. Southern centers had more cases of extraintestinal cancer compared to Northern centers [p=NS]. The frequency of all observed types of cancers in Northern and in Southern centers did not differ compared to the expected one in the background population. CONCLUSIONS: In the fifteen-year follow up of the EC-IBD Study Group cohort the prevalence of cancer was 9.1% with most patients having a single neoplasm and an extraintestinal neoplasm. In Northern centers there were more intestinal cancers while in Southern centers there were more extraintestinal cancers compared to Northern centers. In this IBD cohort the frequency of observed cancers was not different from that expected in the background population.

Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study.

BACKGROUND: The EpiCom-study investigates a possible East-West-gradient in Europe in the incidence of IBD and the association with environmental factors. A secured web-based database is used to facilitate and centralize data registration. AIM: To construct and validate a web-based inception cohort database available in both English and Russian language. METHOD: The EpiCom database has been constructed in collaboration with all 34 participating centers. The database was translated into Russian using forward translation, patient questionnaires were translated by simplified forward-backward translation. Data insertion implies fulfillment of international diagnostic criteria, disease activity, medical therapy, quality of life, work productivity and activity impairment, outcome of pregnancy, surgery, cancer and death. Data is secured by the WinLog3 System, developed in cooperation with the Danish Data Protection Agency. Validation of the database has been performed in two consecutive rounds, each followed by corrections in accordance with comments. RESULTS: The EpiCom database fulfills the requirements of the participating countries' local data security agencies by being stored at a single location. The database was found overall to be "good" or "very good" by 81% of the participants after the second validation round and the general applicability of the database was evaluated as "good" or "very good" by 77%. In the inclusion period January 1st -December 31st 2010 1336 IBD patients have been included in the database. CONCLUSION: A user-friendly, tailor-made and secure web-based inception cohort database has been successfully constructed, facilitating remote data input. The incidence of IBD in 23 European countries can be found at www.epicom-ecco.eu.

E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided 'Constant-care' approach.

BACKGROUND: The natural history of ulcerative colitis requires continuous monitoring of medical treatment via frequent outpatient visits. The European health authorities' focus on e-health is increasing. Lack of easy access to inflammatory bowel disease (IBD) clinics, patients' education and understanding of the importance of early treatment at relapse is leading to poor compliance. To overcome these limitations a randomised control trial 'Constant-care' was undertaken in Denmark and Ireland. METHODS: 333 patients with mild/moderate ulcerative colitis and 5-aminosalicylate acid treatment were randomised to either a web-group receiving disease specific education and self-treatment via http://www.constant-care.dk or a control group continuing the usual care for 12 months. A historical control group was included to test the comparability with the control group. We investigated: feasibility of the approach, its influence on patients' compliance, knowledge, quality of life (QoL), disease outcomes, safety and health care costs. RESULTS: 88% of the web patients preferred using the new approach. Adherence to 4 weeks of acute treatment was increased by 31% in Denmark and 44% in Ireland compared to the control groups. In Denmark IBD knowledge and QoL were significantly improved in web patients. Median relapse duration was 18 days (95% CI 10 to 21) in the web versus 77 days (95% CI 46 to 108) in the control group. The number of acute and routine visits to the outpatient clinic was lower in the web than in the control group, resulting in a saving of 189 euro/patient/year. No difference in the relapse frequency, hospitalisation, surgery or adverse events was observed. The historical control group was comparable with the control group. CONCLUSION: The new web-guided approach on http://www.constant-care.dk is feasible, safe and cost effective. It empowers patients with ulcerative colitis without increasing their morbidity and depression. It has yet to be shown whether this strategy can change the natural disease course of ulcerative colitis in the long term.

IBD patients need in health quality of care ECCO consensus.

INTRODUCTION: : Inflammatory bowel diseases (IBD) is a lifelong disorder with increasing incidence and prevalence. IBD primarily affects young people's productivity in addition to direct and indirect costs. The chronic nature of the disease and the patients' requirement of frequent and easy access to the Health Care providers regarding lifelong medication, social and psychological support and regular follow-up in out-patient clinics are important considerations to address. AIM AND METHODS: : To define IBD patient needs in Quality of Health Care (QoHC) in Europe based on up- to date available evidence. The working group consisted of doctors, nurses and patient organizations from 12 European countries and Israel. Pub Med searching was performed as defined in the Delta Method. Each recommendation was graded (RG) in accordance with level of evidence (EL) based on Evidence Based Medicine, Oxford Centre. During UEGW 2007 the group reconvened to agree on the final version for each chapter of guideline statement RESULTS: : Pub Med search led to 6 RCT, 7 reviews, 63 original articles, but no meta-analysis regarding "Information"; "Education"; "Primary Care", "Quality of life", "Psychological help" and "Benchmarking of Health Care systems" in IBD. Seven ECCO statements have been worked out. CONCLUSION: : Evidence-based medicine in QoHC is limited. It is concluded that optimizing QoHC by "information"; "education", "benchmarking" and "psychological analysis" helps the patient to understand the disease and comply with its therapy, increasing QoL, reducing depression and anxiety. Future aspects regarding more evidence-based science and optimization of QoHC in IBD throughout Europe have been proposed.