Mortality and Causes of Death in Ulcerative Colitis: Results from 20 Years of Follow-up in the IBSEN Study.

BACKGROUND: The best way to obtain knowledge about the natural history, including mortality, of ulcerative colitis (UC) is to conduct a longitudinal, population-based, prospective study. The aims of this study were to calculate the mortality rates and causes of death in patients with UC. METHODS: A prospective, population-based, longitudinal cohort study was conducted in South-Eastern Norway. A total of 519 patients (51.4% men) with UC were included over a 4-year period. A gastroenterologist from a university hospital reviewed the clinical information of all of the patients. Mortality data were retrieved from the Cause of Death Registry and from Statistics Norway. RESULTS: No statistically significant increases in total mortality or cause-specific mortality between the patients with UC and the controls were found. CONCLUSIONS: The present 20-year population-based cohort study revealed a good prognosis regarding the mortality, which partially might be explained by the patients' coverage by a generally well-functioning health care system.

Risk matrix for prediction of advanced disease in a population-based study of patients with Crohn's Disease (the IBSEN Study).

BACKGROUND: Identifying patients with Crohn's disease with increased risk of subsequent complications is essential for appropriate treatment. Based on exploratory analysis, we developed a prediction model for assessing the probability of developing advanced disease 5 and 10 years after diagnosis. METHODS: A population-based cohort of 237 patients with Crohn's disease diagnosed from 1990-1994 was followed for 10 years. In the 5-year analysis, advanced disease was defined as having intestinal resection, progression in disease behavior, or need for thiopurines. The analysis was limited to patients with uncomplicated disease at diagnosis who were alive (n = 140), excluding those who were lost during follow-up (n = 8). For the 10-year analysis, advanced disease was defined as having surgery, excluding those who had surgery within the first 30 days (n = 7), those who died (n = 18), or were lost during follow-up (n = 22). Based on the best fitted multiple model, the probabilities of advanced disease were computed for selected baseline levels of the covariates and the results were arranged in a prediction matrix. Except for ASCA, all predictors were measured at diagnosis. RESULTS: ASCA status, disease location, age, and need for systemic steroids were included in the 5-year prediction matrix. The probabilities of advanced disease during this period varied from 8.6% to 92.0% depending on the combination of predictors. The 10-year matrix combined ASCA status, disease behavior, age, and need for systemic steroids; the probabilities of advanced disease ranged from 12.4% to 96.7%. CONCLUSIONS: Our prediction models revealed substantial differences in the probability of developing advanced disease in the short and intermediate course of Crohn's disease, suggesting that a model-based prediction matrix is useful in early disease management.

Complementary and alternative medicine in patients with inflammatory bowel disease: the results of a population-based inception cohort study (IBSEN).

BACKGROUND AND AIMS: The use of complementary and alternative medicine (CAM) has been increasing in recent decades. Our aim was to determine the proportion of CAM use among patients with inflammatory bowel disease (IBD) in a longitudinal, population-based cohort and to identify predictive factors for CAM use. METHODS: The Inflammatory Bowel South-Eastern Norway (IBSEN) study is a population-based IBD cohort that has been followed prospectively for 10 years. The ten-year follow-up was conducted from 2000 to 2004 and included a questionnaire regarding CAM, a structured interview, a review of hospital records, a clinical examination, laboratory tests, and an ileocolonoscopy. RESULTS: Of the 620 patients evaluated at the ten-year follow-up, 517 (84%) completed the CAM questionnaire, 353 had ulcerative colitis (UC), 164 had Crohn's disease (CD), and 50% were male. Thirty percent reported the use of CAM at some point since their IBD diagnosis, and 7.5% reported current CAM use. More CD patients than UC patients reported CAM use (38% vs. 27%, respectively; p=0.01). Younger age, female gender, and higher education level predicted CAM use in UC, whereas younger age was the only predictor of CAM use in CD. Thirty-six percent of the CAM users were mostly satisfied or very satisfied with the treatment. CONCLUSION: One third of the patients in this population-based cohort had used CAM at some point during a ten-year disease course, but only 7.5% reported current CAM use. CAM use was more common in the CD than in the UC patients. Only socio-demographic factors, such as age, gender and education, predicted CAM use.

Health-related quality of life in patients with ulcerative colitis after a 10-year disease course: results from the IBSEN study.

BACKGROUND: Ulcerative colitis (UC) negatively affects health-related quality of life (HRQoL), but population-based and long-term data on this topic are scarce. Our aim was to determine the HRQoL in UC patients after a 10-year disease duration. METHODS: UC patients from a population-based inception cohort met at a prescheduled 10-year follow-up visit. In addition to a clinical examination, interview, and blood samples, the patients completed the Short Form 36 (SF-36) and the Norwegian Inflammatory Bowel Disease Questionnaire (N-IBDQ). The SF-36 scores were compared to scores from a general population sample using one-sample t-tests. Standardized scores were calculated and interpreted according to Cohen's effect size index. The associations between relevant clinical and demographic factors and HRQoL were examined through linear regression analyses. RESULTS: A total of 196 patients completed the HRQoL questionnaires (response rate: 80%), of whom 54% were women; the mean age of all patients was 48 years (range: 22-86). The SF-36 scores were comparable to those of the general population except for lower scores in the General Health dimension. The SF-36 scores were significantly lower in the presence of current symptoms, in patients who had used corticosteroids, and in patients who reported not working. Overall N-IBDQ scores were equivalent to scores of patients in remission. Female gender, work status (not working), current symptoms, and smoking were associated with significantly lower N-IBDQ scores. CONCLUSIONS: SF-36 scores were not reduced compared to the general population sample. The presence of current symptoms, the use of corticosteroids, work status (not working), female gender, and smoking had a negative impact on HRQoL.