Pia Manninen

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.

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

BACKGROUND An increased mortality has been reported in patients with Crohns 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.

The epidemiology of inflammatory bowel diseases in Finland

Abstract 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 Crohns 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.

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 (&OV0556;) using the Danish Health Costs Register. Results:One thousand three hundred sixty-seven patients were followed, 710 with ulcerative colitis, 509 with Crohns disease, and 148 with inflammatory bowel disease unclassified. Total expenditure for the cohort was &OV0556;5,408,174 (investigations: &OV0556;2,042,990 [38%], surgery: &OV0556;1,427,648 [26%], biologicals: &OV0556;781,089 [14%], and standard treatment: &OV0556;1,156,520 [22%)]). Mean crude expenditure per patient in Western Europe (Eastern Europe) with Crohns disease: investigations &OV0556;1803 (&OV0556;2160) (P = 0.44), surgery &OV0556;11,489 (&OV0556;13,973) (P = 0.14), standard treatment &OV0556;1027 (&OV0556;824) (P = 0.51), and biologicals &OV0556;7376 (&OV0556;8307) (P = 0.31). Mean crude expenditure per patient in Western Europe (Eastern Europe) with ulcerative colitis: investigations &OV0556;1189 (&OV0556;1518) (P < 0.01), surgery &OV0556;18,414 (&OV0556;12,395) (P = 0.18), standard treatment &OV0556;896 (&OV0556;798) (P < 0.05), and biologicals &OV0556;5681 (&OV0556;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.

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 Crohns 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 Crohns 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.

Health-related quality of life improves during one year of medical and surgical treatment in a European population-based inception cohort of patients with Inflammatory Bowel Disease — An ECCO-EpiCom study☆

BACKGROUND & AIMS Health-related quality of life (HRQoL) is impaired in patients with Inflammatory Bowel Disease (IBD). The aim was prospectively to assess and validate the pattern of HRQoL in an unselected, population-based inception cohort of IBD patients from Eastern and Western Europe. METHODS The EpiCom inception cohort consists of 1560 IBD patients from 31 European centres covering a background population of approximately 10.1 million. Patients answered the disease specific Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and generic Short Form 12 (SF-12) questionnaire at diagnosis and after one year of follow-up. RESULTS In total, 1079 patients were included in this study. Crohns disease (CD) patients mean SIBDQ scores improved from 45.3 to 55.3 in Eastern Europe and from 44.9 to 53.6 in Western Europe. SIBDQ scores for ulcerative colitis (UC) patients improved from 44.9 to 57.4 and from 48.8 to 55.7, respectively. UC patients needing surgery or biologicals had lower SIBDQ scores before and after compared to the rest, while biological therapy improved SIBDQ scores in CD. CD and UC patients in both regions improved all SF-12 scores. Only Eastern European UC patients achieved SF-12 summary scores equal to or above the normal population. CONCLUSION Medical and surgical treatment improved HRQoL during the first year of disease. The majority of IBD patients in both Eastern and Western Europe reported a positive perception of disease-specific but not generic HRQoL. Biological therapy improved HRQoL in CD patients, while UC patients in need of surgery or biological therapy experienced lower perceptions of HRQoL than the rest.

Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study

BACKGROUND AND AIMS The EpiCom study and inception cohort was initiated in 2010 in 31 centers from 14 Western and 8 Eastern European countries, covering a 10.1million person background population. Our aim was to investigate whether there is a difference between Eastern and Western Europe in health care and education of patients with inflammatory bowel disease (IBD). METHODS A quality of care (QoC) questionnaire was developed in the EpiCom group consisting of 16 questions covering 5 items: time interval between the onset of symptoms and diagnosis, information, education, empathy and access to health care providers. RESULTS Of 1,515 patients, 947 (217 east/730 west) answered the QoC questionnaire. Only 23% of all patients had knowledge about IBD before diagnosis. In Eastern Europe, significantly more patients searched out information about IBD themselves (77% vs. 68%, p<0.05), the main source was the Internet (92% vs. 88% p=0.23). In Western Europe, significantly more patients were educated by nurses (19% vs. 1%, p<0.05), while in Eastern Europe, gastroenterologists were easier to contact (80% vs. 68%, p<0.05). CONCLUSION Health care differed significantly between Eastern and Western Europe in all items, but satisfaction rates were high in both geographic regions. Because of the low awareness and the rising incidence of IBD, general information should be the focus of patient organizations and medical societies. In Western Europe IBD nurses play a very important role in reducing the burden of patient management.

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

Abstract 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.

Mo1004 Is There an East-West Gradient in the Incidence of IBD in Europe? and Further Far East in China? First Results From the Epicom Study

Is there an east-west gradient in the incidence of IBD in Europe? : and further far east in China? First results from the epicom study

Frequency of anaemia and anaemia subtypes in east-west European inception cohort : an ECCO-EpiCom cohort study

Frequency of anaemia and anaemia subtypes in east-west European inception cohort : an ECCO-EpiCom cohort study