BACKGROUND AND AIMS:Identifying patients at risk of developing severe inflammatory bowel disease (IBD) can aid treatment decisions. However, predicting disease course remains challenging. We aimed to identify predictive factors associated with severe disease course in the first year after IBD diagnosis. METHODS:Newly diagnosed adult (≥18 years) patients with IBD were recruited from a population-based inception cohort (IBSEN III study). Preselected baseline factors were tested for associations with severe disease course, defined as IBD-related hospitalisation, surgery, treatment with ≥2 steroid courses, >2 biologics and/or new event of complication (stricture, fistula, abscess only applicable Crohn's disease (CD)). From a best fitted multivariable logistic regression model stratified by diagnosis and age (18-40/>40 years), probability of severe disease for given combinations of predictive factors was summarised in prediction matrices. RESULTS:At one-year follow-up, 90/559 (16%) patients with ulcerative colitis (UC) and 74/312 (24%) with CD had severe disease. Treatment with systemic steroids, vitamin D deficiency, Simple Clinical Colitis Activity Index >2, and hypoalbuminemia at diagnosis were all significantly associated with severe disease in UC patients. CD patients with stricturing or penetrating disease behaviour, systemic steroids and hypoalbuminemia at diagnosis were associated with severe disease course. The least favourable combination of these factors increased the probability of severe disease from 3% (95%CI[0-5%]) to 72% (95%CI[66-79%]) for UC and from 8% (95%CI[3-13%]) to 88% (95%CI[84-93%]) for CD. CONCLUSIONS:Our study identified predictive factors associated with severe disease the first year after diagnosis. The probability of severe disease summarised in matrices enables easy risk stratification.

BACKGROUND AND AIMS:The emergence of biologic therapy has coincided with a decline in surgery rates for Crohn's disease (CD). This study aims to describe the disease course, including intra-abdominal surgery rates, biologic therapy use, and variables associated with biologic therapy initiation in a cohort of newly diagnosed CD patients. METHODS:The Inflammatory Bowel Disease in South-Eastern Norway (IBSEN) III study is a population-based inception cohort study. From 2017 to 2019, newly diagnosed inflammatory bowel disease patients were included for prospective follow-up. The present study included CD patients ≥ 18 years. Clinical, endoscopic, and demographic data were collected at diagnosis and 1-year follow-up. Data were analyzed by using the Kaplan-Meier method and regression analyses. RESULTS:In total, 424 CD patients (median age 37.0 years (range 18-80), female 55.0%) were included. At diagnosis, 50.5% presented with ileal disease and 80.7% with inflammatory behavior. Within a 1-year follow-up, 39.6% of patients received their first biologic therapy and 5.2% required intra-abdominal surgery. Systemic steroid treatment, CRP ≥ 5.0 mg dL-1, Harvey-Bradshaw Index score > 4, ileocolonic disease and penetrating disease behavior at diagnosis were independently associated with increased risk of initiation of biologic therapy, while age > 40 years was associated with decreased risk. CONCLUSION:A high proportion of patients had ileal disease and inflammatory behavior at diagnosis. Still, nearly 40% started biologic therapy within the 1-year follow-up, while only 5% required intra-abdominal surgery.

SummaryBackgroundThe introduction of biologic therapies and the ‘treat‐to‐target’ treatment strategy may have changed the disease course of ulcerative colitis (UC).AimsTo describe the early disease course and disease outcome at 1‐year follow‐up in a population‐based inception cohort of adult patients with newly diagnosed UC.MethodsThe Inflammatory Bowel Disease in South‐Eastern Norway (IBSEN) III study is a population‐based inception cohort study with prospective follow‐up. Patients newly diagnosed with inflammatory bowel disease during 2017–2019 were included. Patients ≥18 years at diagnosis of UC who attended the 1‐year follow‐up were investigated. We registered clinical, endoscopic and demographic data at diagnosis and 1‐year follow‐up.ResultsWe included 877 patients with UC (median age 36 years (range: 18–84), 45.8% female). At diagnosis, 39.2% presented with proctitis, 24.7% left‐sided colitis and 36.0% extensive colitis. At the 1‐year follow‐up, 13.9% experienced disease progression, and 14.5% had received one or more biologic therapies. The colectomy rate was 0.9%. Steroid‐free clinical remission was observed in 76.6%, and steroid‐free endoscopic remission in 68.7%. Anaemia and initiation of systemic steroid treatment at diagnosis were associated with biologic therapy within the first year after diagnosis.ConclusionIn this population‐based inception cohort, colectomy rate in the first year after diagnosis was low, and a high proportion of patients were in remission at 1‐year follow‐up. The use of biologic therapy increases, consistent with findings from previous studies.

BACKGROUND AND AIM:Modern treatment strategies for inflammatory bowel disease (IBD) are postulated to change the natural disease course. Inception cohort studies are the gold standard for investigating such changes. We have initiated a new population-based inception cohort study; Inflammatory bowel disease in South Eastern Norway III (IBSEN III). In this article, we describe the study protocol and baseline characteristics of the cohort.METHODS:IBSEN III is an ongoing, population-based observational inception cohort study with prospective follow-up. Adult and pediatric patients with suspected IBD in the South-Eastern Health Region of Norway (catchment area of 2.95 million inhabitants in 2017), during the 3-year period from 2017 to 2019, were eligible for inclusion. Comprehensive clinical, biochemical, endoscopic, demographic, and patient-reported data were collected at the time of diagnosis and throughout standardized follow-up. For a portion of the patients, extensive biological material was biobanked.RESULTS:The study included 2168 patients, of whom 1779 were diagnosed with IBD (Crohn's disease: 626, ulcerative colitis: 1082, IBD unclassified: 71). In 124 patients, there were subtle findings indicative of, but not diagnostic for, IBD. The remaining 265 patients were classified as symptomatic non-IBD controls.CONCLUSION:We have included patients in a comprehensive population-based IBD cohort from a catchment population of 2.95 million, and a unique biobank with materials from newly diagnosed and treatment-naïve IBD patients and symptomatic non-IBD controls. We believe this cohort will add important knowledge about IBD in the years to come.

Han vokste opp i Kvinesdal. Han var skoleflink, og i 1960 tok han artium etter to år ved Hornnes landsgymnas og ble cand.med. ved Universitetet i Oslo i 1966. Etter turnustjeneste i Kristiansand og Høyanger, verneplikt, og en periode som distriktslege i Audnedal i 1968/69, hadde han assistentlegestillinger ved sykehusene i Odda, Kristiansand og Ullevål. Han fikk sine spesialiteter i generell indremedisin og i fordøyelsessykdommer i 1978 og var godt rustet da han i 1979 begynte som overlege ved Vest-Agder sentralsykehus (VAS), som det het den gang.

Background and Aims: The long-term course of ulcerative colitis [UC] is difficult to predict. Mortality, colectomy, cancer, and hospitalisation represent hard outcomes of disease. Moreover, knowledge on the risk of relapses and need for potent medication add important information about living with UC. We aimed to evaluate the course and prognosis of UC during the first 20 years after diagnosis, and to identify early prognostic risk factors. Methods: From 1990 to 1994, a population-based inception cohort of patients with inflammatory bowel disease was enrolled in South-Eastern Norway. A systematic follow-up [FU] was conducted at 1,5,10, and 20 years after diagnosis. Clinical outcomes were recorded continuously, and possible relationships between early disease characteristics and outcomes were analysed using multiple regression analysis. Results: Among 519 UC patients, 119 died, 60 were lost to FU, and 340 were included in the FU cohort.The 20-year cumulative risk of colectomy was 13.0% (95% confidence interval [CI][11.4-14.6]). Extensive colitis at diagnosis was independently associated with an increased risk of colectomy compared with proctitis (hazard ratio [HR] = 2].8, 95% CI [1.3-6.1]). In contrast, mucosal healing at 1-year FU was independently associated with reduced risk of colectomy [HR = 0.4, 95% CI 10.2-0.8]), and inversely associated with subsequent risk of relapse [adjusted HR = 0.5, 95% CI 10.3-0.7]). Conclusions: The overall risk of colectomy in our cohort was lower than expected from previous studies, although considerable for patients with extensive colitis at diagnosis. Early mucosal healing was associated with better disease outcomes 20 years after diagnosis.

Objective The association between ulcerative colitis (UC) and colorectal cancer (CRC) is widely accepted, although attenuated risk has been reported in recent years. Colonoscopic surveillance is recommended with intervals based on established clinical risk factors. Nevertheless, a significant number of patients develop interval cancers, indicating the need of improved individualised assessment. In the present study, we evaluated clinical risk factors associated with CRC during a prescheduled follow-up 20 years after diagnosis, the IBSEN study. Design A population-based inception cohort of patients diagnosed with inflammatory bowel disease from 1 January 1990 until 31 December 1993, prospectively followed at 1, 5, 10 and 20 years after diagnosis. A total of 517 patients with UC were included; 264 (51 %) men; median age at inclusion 37.4 years (4–88). Results The overall incidence of CRC was 1.6% (8/517) at a 20-year follow-up. The total lifetime risk of CRC prior to or after UC diagnosis was 2.3%. (12/517). Patients older than 70 years at diagnosis had a 15-fold higher risk of CRC compared with those diagnosed when younger than 40 years, with HR 15.68 (95% CI: 1.31 to 187.92). Neither sex, first-degree relative with CRC, extent of colitis nor primary sclerosing cholangitis affected the risk of CRC. Conclusion The risk of CRC in UC was low and comparable with the risk of CRC in the background population of Norway.

Background and aims The quality of medical quality registers is poorly defined and lack of trust in data due to low completeness may be a major barrier against their use in quality improvement interventions. The aim of the current observational study was to explore how selective reporting may influence adverse events registered in the Norwegian quality register for colonoscopy (Gastronet). Materials and methods Gastronet’s database includes data provided by endoscopists, nurses and patients. All outpatient colonoscopies reported to Gastronet in 2015 were included and compared to the total number of colonoscopies performed in Norway as retrieved from the National Patient Registry. Hospitals were categorized into four groups according to reporting completeness < 50 %, 50 % to 69 %, 70 % to 89 % and ≥ 90 %. The number of recorded adverse events (AEs) and procedure time were analyzed. Multivariate logistic regression models were fitted to explore independent factors for selection bias. Results A total of 22,364 colonoscopies were reported to the National Patient Register of which 15,855 (71 %) were registered in Gastronet. Feedback was received from 11,079 patients (50 %). The frequency of AEs increased from 0.6 % in completeness group < 50 % to 1.6 % in completeness group ≥ 90 % (P < 0.001). Long colonoscopy procedure time was associated with low reporting completeness. Patient feedback was associated with older age, cecal intubation success and sedation-free colonoscopy. Conclusion Incomplete registration in a colonoscopy quality register is associated with underreporting of AEs. Longer procedure time, a surrogate marker for time constraint, is associated with low completeness.

BACKGROUND: Use of complementary and alternative medicine (CAM) is common among IBD patients (1). The CAM modalities used include a wide specter of health care practices and therapies (2). In a previous study from this population, we found that almost one third of the patients used CAM 10 years after diagnosis (3). The aim of this follow-up study was to assess CAM use in IBD patients 20 years after diagnosis. METHODS: The Inflammatory Bowel South-Eastern Norway (IBSEN) study is a population based study with a prospective design. From January 1990 to December 1993, all newly diagnosed patients with IBD from a well defined area in South Eastern Norway were included in the cohort. The 20-year follow-up was conducted between 2011 and 2014 and included a structured interview, a review of patient records, a clinical examination, laboratory tests, and a questionnaire regarding CAM use. RESULTS: Of the 599 invited to attend the 20-year follow - up visit, 78.5% (UC = 314, CD = 156) participated in the follow- up study, whereof 93% (UC = 293 and CD = 146) completed the CAM questionnaire, 49% men. In total 122/439 (28%) reported use of CAM for their IBD, and 6% reported current CAM use. A significantly higher proportion women than men (60% vs 40%, P = 0.02) reported to use CAM. CAM users were younger (49 years) than the non-users (56 years), P < 0.001. A significantly higher proportion CD patients compared to UC patients (34% vs 25%, P = 0.04) reported CAM use. Treatment with CAM occurred more frequently in patients with more than one relapse the last year than in patients in remission (35% vs 21%, P = 0.003). The 3 most commonly used types of CAM were acupuncture 63/122 (52%), homeopathy 49/122 (40%) and herbal medicine 47/122 (39%). The 2 most common reasons for using CAM was as (1) a supplement to conventional treatment (41%) and (2) lack of effect from conventional medicine (32%). CONCLUSION(S): One third of the IBD patients reported CAM use 20 years after diagnosis. Prevalence of CAM use was comparable in the 10-year and 20-year follow- up. CAM use was more common among women, in younger patients, in UC patients, and in those with disease activity.

Background: At time of diagnosis, patients with celiac disease (CD) have been shown to have lower bone mineral density (BMD) than healthy controls. It is unclear whether adult patients with CD can regain a normal BMD after treatment with a gluten-free diet (GFD). Methods: Patients diagnosed with CD as adults, who had been treated with GFD for a minimum of two years, were examined by dual energy X-ray absorptiometry (DXA) to determine BMD at femoral neck and spine L2-4. Adherence to GFD was measured using the Celiac Disease Adherence Test (CDAT) scoring tool. Results: 143 CD patients underwent DXA assessment, mean age was 55.8 years and mean treatment duration was 9.3 years. 67% of the patients were women, and 51% of these were postmenopausal. The prevalence of low bone mass (Z-score <= -1.0) was 18.2% (95%CI: 12.7-25.3%) at femoral neck and 23.1% (95%CI: 16.9-30.6%) at spine L2-4. An increase in low bone density prevalence at spine L2-4 compared to the expected prevalence (p = 0.016) was limited to the postmenopausal women. In a multiple regression analysis, only postmenopausal status and poor adherence to GFD was independently associated with reduced bone density, this however limited to spine L2-4. Conclusion: Our study shows a small increase in the prevalence of low bone density at lumbar spine limited to the postmenopausal women. The main finding is that the majority of the CD patients after two years of treatment with GFD had a normal bone density when adjusted for age, gender, ethnicity and weight.

BACKGROUND:Patients with inflammatory bowel disease [IBD] often suffer from rheumatic manifestations, including inflammatory back disorders. The prevalence of these disorders late in the course of IBD is poorly investigated. The aim of this study was to estimate the prevalence of inflammatory back disorders in patients with IBD 20 years after diagnosis, and to investigate possible associations with IBD severity, HLA-B27, and the NOD2 genotype.METHODS:A population-based cohort [the IBSEN study] was followed prospectively for 20 years. Information covering IBD activity and rheumatic diseases was collected at the regular follow-ups. HLA-B27 and NOD2 were analysed as present or absent.RESULTS:At 20 years, 599 members of the original cohort were alive, of whom 470 [78.5%] were investigated [314 ulcerative colitis and 156 Crohn's disease patients]. Ankylosing spondylitis was diagnosed in 21 patients [4.5%], axial spondyloarthritis was diagnosed in 36 patients [7.7%], and inflammatory back pain was diagnosed in 54 patients [11.5%]. Chronic back pain [back pain > 3 months] was present in 220 patients [46.8%]. HLA-B27 was associated with ankylosing spondylitis, axial spondyloarthritis, and inflammatory back pain, whereas no significant association was found for NOD2. A more chronic IBD course was associated with axial spondyloarthritis.CONCLUSIONS:Our data revealed a high prevalence of ankylosing spondylitis, axial spondyloarthritis, and inflammatory back pain 20 years after the IBD diagnosis. HLA-B27 but not NOD-2 was a predisposing factor for the inflammatory back disorders in IBD patients. Axial spondyloarthritis was associated with a more chronic active IBD disease course.

Background and study aims Some guidelines recommend a minimum standard of 90% cecal intubation rate (CIR) in routine clinics and 95% in screening colonoscopy, while others have not made this distinction - both with limited evidence to support either view. This study questions the rationale for making such differentiation. Patients and methods We assessed cecum intubation rates amongst colonoscopies recorded in the Norwegian national quality register Gastronet by 35 endoscopists performing both clinical and screening colonoscopies. Colonoscopies were categorized into primary screening colonoscopy, work-up colonoscopy of screen-positives and clinical colonoscopy or surveillance. Cases with insufficient bowel preparation or mechanical obstruction were excluded. Endoscopists were categorized into "junior" and "senior" endoscopists depending on training and experience. Univariable and multivariable logistic regression analyses were applied. Results During a 2-year period, 10,267 colonoscopies were included (primary screening colonoscopy: 746; work-up colonoscopy of screen-positives: 2,604; clinical colonoscopy or surveillance: 6917). The crude CIR in clinical routine colonoscopy, primary screening colonoscopy and work-up colonoscopy was 97.1%, 97.1% and 98.6%, respectively. In a multiple logistic regression analysis, there were no differences in CIR between the 3 groups. Poor bowel cleansing and female sex were independent predictors for intubation failure. Conclusion Cecal intubation rate in clinical colonoscopies and colonoscopy screening are similar. There is no reason to differentiate between screening and clinical colonoscopy with regard to CIR.

Background and aims Patient-reported outcome measures are increasingly important in healthcare. European guidelines have recommended inclusion of patient feedback to capture adverse events due to colonoscopy, but this is rarely implemented. Methods The Norwegian Quality Assurance network for endoscopy (Gastronet) collects patient-reported outcome for colonoscopies. Free-text comments on patient reports from January to December 2015 were characterized as positive or negative. All negative free-text comments were scrutinized for information that might suggest colonoscopy-related adverse events. We identified severe adverse events with and without admission to hospital. Results We included 16 552 outpatient colonoscopies performed at 21 hospitals. A total of 11 248 procedures (68 %) were accompanied by a patient feedback report, of which 2628 (23 %) had free-text comments (2196 [20 %] characterized as positive and 432 [3.8 %] as negative). These negative free texts on patient reports revealed 15 post-colonoscopy hospital admissions due to adverse events that had not been registered in the colonoscopy report. This increased the number of hospital admissions caused by adverse events from 3 (0.03 %) to 18 (0.16 %). In addition, there were 14 patient reports of severe events without hospital admission. Therefore, a total of 29 severe adverse events reported by patients were missed by conventional documentation in the colonoscopy form. Conclusion It is feasible to implement patient feedback as routine reporting to capture the full picture of colonoscopy-related adverse events. Some patients experience significant complications that are not recorded through any registries. Patient feedback forms should be tailored to capture adverse events after colonoscopy that are otherwise not easily disclosed.

BACKGROUND & AIMS: The prevalence of primary sclerosing cholangitis (PSC) among patients with inflammatory bowel disease (IBD) is unclear. Patients with IBD might be screened for PSC using magnetic resonance cholangiography (MRC). We aimed to estimate the frequency and distribution of MRC-detected lesions that indicate PSC in patients with IBD 20 years after their initial diagnosis and to identify clinical characteristics associated with these findings. METHODS: We performed a follow-up analysis of a population-based cohort of 756 patients in South-Eastern Norway diagnosed with IBD from January 1, 1990 through December 31, 1993. Of these subjects, 470 attended a follow-up evaluation 20 years later in which they were offered routine clinical blood testing and ileocolonoscopy; 322 were screened by MRC (222 with ulcerative colitis and 100 with Crohn's disease). Two radiologists independently evaluated results from the MRC examinations. RESULTS: In the MRC examination, 24 patients (7.5%) were found to have PSC-like lesions; only 7 of these patients (2.2%) were known to have PSC. One patient was initially missed and 1 had small-duct PSC, so the final prevalence of PSC was 8.1%. Extensive colitis, a high prevalence of colectomy, and chronic and continuous symptoms of IBD occurred in significantly more patients with suspected PSC than without PSC (P =.029, P =.002, and P =.012, respectively). Among patients with subclinical features of PSC, the MRC progression score for PSC increased when they were re-examined after a median 3.2 years (P =.046). CONCLUSIONS: Using MRC analysis of patients with long-term IBD, we found the prevalence of PSC to be around 3-fold higher than that detected based on symptoms. Sixty-five percent of patients had subclinical PSC associated with progressive IBD, with no biochemical abnormalities and mild disease, based on radiology findings. PSC appears to progress in patients with subclinical disease, but long-term outcomes are not known.

IMPORTANCE Although some countries have implemented widespread colonoscopy screening, most European countries have not introduced it because of uncertainty regarding participation rates, procedure-related pain and discomfort, endoscopist performance, and effectiveness. To our knowledge, no randomized trials on colonoscopy screening currently exist. OBJECTIVE To investigate participation rate, adenoma yield, performance, and adverse events of population-based colonoscopy screening in several European countries. DESIGN, SETTING, AND POPULATION A population-based randomized clinical trial was conducted among 94 959 men and women aged 55 to 64 years of average risk for colon cancer in Poland, Norway, the Netherlands, and Sweden from June 8, 2009, to June 23, 2014. INTERVENTIONS Colonoscopy screening or no screening. MAIN OUTCOMES AND MEASURES Participation in colonoscopy screening, cancer and adenoma yield, and participant experience. Study outcomes were compared by country and endoscopist. RESULTS Of 31 420 eligible participants randomized to the colonoscopy group, 12 574 (40.0%) underwent screening. Participation rates were 60.7% in Norway (5354 of 8816), 39.8% in Sweden (486 of 1222), 33.0% in Poland (6004 of 18 188), and 22.9% in the Netherlands (730 of 3194) (P < .001). The cecum intubation rate was 97.2% (12 217 of 12 574), with 9726 participants (77.4%) not receiving sedation. Of the 12 574 participants undergoing colonoscopy screening, we observed 1 perforation (0.01%), 2 postpolypectomy serosal burns (0.02%), and 18 cases of bleeding owing to polypectomy (0.14%). Sixty-two individuals (0.5%) were diagnosed with colorectal cancer and 3861 (30.7%) had adenomas, of which 1304 (10.4%) were high-risk adenomas. Detection rates were similar in the proximal and distal colon. Performance differed significantly between endoscopists; recommended benchmarks for cecal intubation (95%) and adenoma detection (25%) were not met by 6 (17.1%) and 10 of 35 endoscopists (28.6%), respectively. Moderate or severe abdominal pain after colonoscopy was reported by 601 of 3611 participants (16.7%) examined with standard air insufflation vs 214 of 5144 participants (4.2%) examined with carbon dioxide (CO2) insufflation (P < .001). CONCLUSIONS AND RELEVANCE Colonoscopy screening entails high detection rates in the proximal and distal colon. Participation rates and endoscopist performance vary significantly. Postprocedure abdominal pain is common with standard air insufflation and can be significantly reduced by using CO2. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT00883792.

OBJECTIVE:The prevalence of persistent villous atrophy (VA) in patients with celiac disease (CD) on a gluten-free diet (GFD) varies greatly between studies. Most studies show a relatively high prevalence of mucosal atrophy and inflammation in treated patients, a finding which have led to a concept of non-responsive CD. Few studies have examined the prevalence of long-term mucosal healing. Our study aimed to determine the extent of mucosal healing in a cohort of Norwegian patients with CD treated with GFD for several years.MATERIALS AND METHODS:Adult patients diagnosed with VA between 1989 and 2009 were included. We performed a follow-up gastroscopy with duodenal biopsies. Two pathologists evaluated the biopsies according to the Marsh-Oberhuber classification. Mucosal healing was defined as Marsh 0 while mucosal recovery was defined as Marsh 0-2.RESULTS:Duodenal biopsies were obtained from 127 adult patients with established CD. After a follow-up time of 8.1 years (median, range 2.3-22.3), 103 (81%) of the patients showed mucosal healing, 120 patients (94%) showed mucosal recovery, and 7 patients (6%) showed persistent VA. In addition, 103 of the 127 patients (81%) had undergone a routine follow-up biopsy 12.6 months (median, range 5.2-28.8) after diagnosis. At the time of the routine follow-up, only 52 of these patients (50.5%) had achieved mucosal recovery.CONCLUSIONS:Although half of the patients had persistent VA at the time of routine follow-up, both long-term mucosal recovery and healing is possible for the vast majority of adult patients with CD.

Background:Data on the long-term observation of health-related quality of life (HRQoL) in the inflammatory bowel diseases (IBD), Crohn's disease (CD), and ulcerative colitis are scarce. Our aim was to determine HRQoL in a population-based cohort of patients with IBD 20 years after diagnosis and its association with demographic and clinical factors and to compare HRQoL of the cohort with that of the background population. Methods:Patients with IBD from a large population-based inception cohort (the IBSEN cohort) were invited to a prescheduled 20-year follow-up visit with a structured interview, a clinical examination, and laboratory tests. They completed the Short-Form 36 and the Norwegian Inflammatory Bowel Disease Questionnaire. The association between demographic and clinical factors and HRQoL was assessed with a linear regression analysis. Standardized scores were used to compare HRQoL in patients with that of the background population. Results:Of the still-living patients with IBD, 438 (73.1%) completed the HRQoL questionnaires. There were no differences in HRQoL scores between the patients with ulcerative colitis and those with CD. Women with CD obtained scores lower than those of men and women with CD in the background population. Current symptoms, increased disease activity, and not working were identified as factors associated with reduced HRQoL. Conclusions:In this population-based IBD cohort, the overall HRQoL scores obtained 20 years after diagnosis were relatively unaffected compared with the background population. However, women with CD had lower HRQoL scores than men with CD and women in the background population. Active disease and not working were the main factors associated with impaired HRQoL scores.

Objective: Fatigue is a major concern for patients with ulcerative colitis (UC) and Crohn's disease (CD), but evidence from population-based studies regarding fatigue in long-standing inflammatory bowel disease (IBD) patients is scarce. Our aims were to assess fatigue scores and the prevalence of chronic fatigue in IBD patients 20 years after diagnosis and to identify variables associated with fatigue in this cohort.Methods: Twenty years after diagnosis, patients from a cohort with incident IBD were invited to a follow-up visit that included a structured interview, a clinical examination, laboratory tests and the Fatigue Questionnaire (FQ). Fatigue scores were obtained, and factors associated with fatigue were assessed via linear and logistic regression analyses.Results: Of the 599 invited patients, 440 (73.5%) completed the FQ. Among those with active disease, we found significantly higher fatigue scores than among those with quiescent disease (fatigue scores: UC 17.1 versus 12.4, p<.001, and CD 17.5 versus 13.3, p<.001). The fatigue scores of those with quiescent disease were comparable with those of the reference population. Chronic fatigue was more frequent among IBD patients than in the reference population. Factors associated with fatigue included self-perceived disease activity, poor sleep quality, anxiety and depression.Conclusion: At 20 years after IBD diagnosis, fatigue scores were higher and chronic fatigue was more frequent among IBD patients with active disease than in the reference population and among those with quiescent IBD. Subjectively perceived disease activity, sleep quality, anxiety and depression were associated with fatigue in IBD patients.

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.

Background. Patients with inflammatory bowel disease (IBD) have proven an increased risk of venous thromboembolism (VTE), particularly when hospitalized. The estimate of the true risk varies considerably between studies, primarily due to differences in methodology. We set out to determine the incidence of VTE in a population-based European inception cohort. Methods. IBD patients were incepted into a cohort that was prospectively followed from the early 1990s to the early 2000s. A total of 1145 patients were followed for a total of 10,634 patient-years (p.y.). Results. A total of 19 thromboembolic events were identified - 13 deep vein thrombosis and 6 with pulmonary embolism. The incidence rate of VTE was 1.8 per 1000 p.y. Conclusion. The risk of VTE was elevated in this IBD cohort but lower than previously reported. The highest risk was seen in hospitalized patients, but corticosteroids-requiring disease in outpatients also conferred some risk.