Colorectal cancer and cholangiocarcinoma in patients with primary sclerosing cholangitis and inflammatory bowel disease.

OBJECTIVE: Inflammatory bowel disease (IBD) patients with concomitant primary sclerosing cholangitis (PSC) carry an increased risk of colorectal cancer (CRC) and cholangiocarcinoma (CCA). We evaluated the relative risk of these malignancies in IBD patients with PSC, who had been under regular surveillance. MATERIAL AND METHODS: The survey involved a cohort of 51 patients with IBD and concomitant PSC. All patients had been under regular surveillance for a median of 19 years. The standardized incidence ratios (SIRs) of CRC and CCA were estimated between 1986 and 2007. RESULTS: During the follow up, three patients (5.9%) developed CRC and five patients (9.8%) developed CCA. SIRs were 20.71 (95% confidence interval [CI]: 5.62-79.70) and 916.63 (95% CI: 297.88-2140.99), respectively. The median age at diagnosis of CRC was 39.5 years. All patients with PSC were <45 years of age at the time of detecting CRC and had other risk factors for CRC. The median age at the time of the CCA diagnosis was 54.0 years. CONCLUSION: Despite regular surveillance, the relative risks of CCA and CRC remained increased in patients with IBD and PSC. A rigorous endoscopic surveillance is maintained for all patients with PSC, but better indicators of the development of CCA are urgently needed.

Costs and resource utilization for diagnosis and treatment during the initial year in a European inflammatory bowel disease inception cohort: an ECCO-EpiCom Study.

BACKGROUND: No direct comparison of health care cost in patients with inflammatory bowel disease across the European continent exists. The aim of this study was to assess the costs of investigations and treatment for diagnostics and during the first year after diagnosis in Europe. METHODS: The EpiCom cohort is a prospective population-based inception cohort of unselected inflammatory bowel disease patients from 31 Western and Eastern European centers. Patients were followed every third month from diagnosis, and clinical data regarding treatment and investigations were collected. Costs were calculated in euros (€) using the Danish Health Costs Register. RESULTS: One thousand three hundred sixty-seven patients were followed, 710 with ulcerative colitis, 509 with Crohn's disease, and 148 with inflammatory bowel disease unclassified. Total expenditure for the cohort was €5,408,174 (investigations: €2,042,990 [38%], surgery: €1,427,648 [26%], biologicals: €781,089 [14%], and standard treatment: €1,156,520 [22%)]). Mean crude expenditure per patient in Western Europe (Eastern Europe) with Crohn's disease: investigations €1803 (€2160) (P = 0.44), surgery €11,489 (€13,973) (P = 0.14), standard treatment €1027 (€824) (P = 0.51), and biologicals €7376 (€8307) (P = 0.31). Mean crude expenditure per patient in Western Europe (Eastern Europe) with ulcerative colitis: investigations €1189 ( €1518) (P < 0.01), surgery €18,414 ( €12,395) (P = 0.18), standard treatment €896 ( €798) (P < 0.05), and biologicals €5681 ( €72) (P = 0.51). CONCLUSIONS: In this population-based unselected cohort, costs during the first year of disease were mainly incurred by investigative procedures and surgeries. However, biologicals accounted for >15% of costs. Long-term follow-up of the cohort is needed to assess the cost-effectiveness of biological agents.

Initial disease course and treatment in an inflammatory bowel disease inception cohort in Europe: the ECCO-EpiCom cohort.

BACKGROUND: The EpiCom cohort is a prospective, population-based, inception cohort of inflammatory bowel disease (IBD) patients from 31 European centers covering a background population of 10.1 million. The aim of this study was to assess the 1-year outcome in the EpiCom cohort. METHODS: Patients were followed-up every third month during the first 12 (±3) months, and clinical data, demographics, disease activity, medical therapy, surgery, cancers, and deaths were collected and entered in a Web-based database (www.epicom-ecco.eu). RESULTS: In total, 1367 patients were included in the 1-year follow-up. In western Europe, 65 Crohn's disease (CD) (16%), 20 ulcerative colitis (UC) (4%), and 4 IBD unclassified (4%) patients underwent surgery, and in eastern Europe, 12 CD (12%) and 2 UC (1%) patients underwent surgery. Eighty-one CD (20%), 80 UC (14%), and 13 (9%) IBD unclassified patients were hospitalized in western Europe compared with 17 CD (16%) and 12 UC (8%) patients in eastern Europe. The cumulative probability of receiving immunomodulators was 57% for CD in western (median time to treatment 2 months) and 44% (1 month) in eastern Europe, and 21% (5 months) and 5% (6 months) for biological therapy, respectively. For UC patients, the cumulative probability was 22% (4 months) and 15% (3 months) for immunomodulators and 6% (3 months) and 1% (12 months) for biological therapy, respectively in the western and eastern Europe. DISCUSSION: In this cohort, immunological therapy was initiated within the first months of disease. Surgery and hospitalization rates did not differ between patients from eastern and western Europe, although more western European patients received biological agents and were comparable to previous population-based inception cohorts.

The risk of colorectal cancer in patients with inflammatory bowel diseases in Finland: a follow-up of 20 years.

BACKGROUND AND AIMS: Data on the relative risk of colorectal cancer in inflammatory bowel diseases (IBD) are inconsistent. To prevent the development of cancer, endoscopic facilities should be targeted correctly. We report here the results of a 20-year follow-up in Finland and evaluate the efficacy of endoscopic surveillance in cancer prevention. METHODS: The data were based on an IBD register in our catchment area in 1986-2007. The population-based cohort comprised 1915 patients, 1254 with ulcerative colitis, 550 with Crohn's disease and 111 with inflammatory bowel unclassified. Colorectal cancer cases were obtained from the IBD register; the colorectal cancer figures in the respective population were obtained from the Finnish Cancer Registry. RESULTS: Colorectal cancer was found in 21 patients, the standardized incidence ratio (SIR) being 1.83 (95% confidence interval (CI) 1.13-2.79) for IBD. Colorectal cancer risk was 3.09 (CI 1.50-5.75) for extensive UC, and 3.62 (CI 2.00-11.87) for Crohn's disease affecting the colon. Eleven (52%) of the colorectal cancer cases were TNM stage 3 or 4. In the same observation period 10 colectomies with ileoanal anastomosis were performed with the indication of cancer risk in ulcerative colitis; of these 10 patients only two had no additional risk factors for colorectal cancer, for example primary sclerosing cholangitis, pseudopolyposis or active disease. CONCLUSIONS: The risk of colorectal cancer in the cohort was only moderately increased. In the absence of additional risk factors, endoscopic surveillance was of limited benefit. We therefore suggest intensive endoscopy surveillance to be targeted on patients with definite risk factors.

Mortality in ulcerative colitis and Crohn's disease. A population-based study in Finland.

BACKGROUND: An increased mortality has been reported in patients with Crohn's disease (CD), while figures have remained similar or decreased in patients with ulcerative colitis (UC) compared to the population in general. We evaluated the long-term mortality risk of patients with inflammatory bowel diseases (IBD) in a well-defined population. METHODS: The data were based on a prospective IBD register in our catchment area; follow-up covered 1986-2007. The population based cohort comprised 1915 adult patients, 1254 with UC, 550 with CD, and 111 with inflammatory bowel disease unclassified (IBDU). The mortality rate and causes of death were obtained from Statistics Finland. RESULTS: We recorded 223 deaths among the 1915 patients with IBD within a follow-up of 29,644 person-years. The standardised mortality rate (SMR) was 1.14 in CD and 0.90 in UC. In cause-specific mortality; the risk of death in diseases of the digestive system was significantly increased in CD (SMR 5.38). The mortality in colorectal cancer was non-significantly increased in both UC and CD (SMR 1.80 and 1.88, respectively). Compared to the background population, there were significantly fewer deaths due to mental and behavioural disorders due to use of alcohol (0 observed, 10.2 expected in IBD). CONCLUSIONS: The overall mortality in CD and CU was not different from that in the population. In cause-specific mortality, diseases of the digestive system were significantly increased. Deaths due to mental and behavioural disorders resulting from alcohol consumption were less common in patients with IBD than in the population at large in Finland.

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.

The epidemiology of inflammatory bowel diseases in Finland.

OBJECTIVE: There is evidence that the incidence of inflammatory bowel diseases is increasing, but the data are inconsistent. For appropriate allocation of health care resources, knowledge of the actual occurrence of diseases is important. We here conducted an epidemiological survey using a population-based register in a well-defined area representative of the whole Finnish population. MATERIAL AND METHODS: The collection of cases took place in 1986-1999 in the Tampere region, which comprised 363,000 adults in 1999. All municipal centers detecting and managing inflammatory bowel diseases participated in the study. Particular effort was made to register all cases. RESULTS: The total number of patients was 1691. The prevalence per 100,000 inhabitants in 1986 was 119 for ulcerative colitis (UC), 40 for Crohn's disease (CD) and 9 for inflammatory bowel disease unclassified (IBDU); in 1999 the respective figures were 291, 124 and 27. During the study period, the annual incidence of UC increased from 13.3 to 19.6 per 100,000, and that of CD from 5.0 to 9.4, whereas the incidence of IBDU decreased from 1.2 to 0.3. The extent of the diseases remained by and large unaltered over the time of survey. CONCLUSIONS: An increasing trend was observed in the number of patients with inflammatory bowel disease, and the frequency was higher than that reported in most surveys. This increase constitutes a challenge for the health care system.