Worries and Concerns among Inflammatory Bowel Disease Patients Followed Prospectively over One Year

Disease-related worries are frequently reported in inflammatory bowel disease (IBD), but longitudinal assessments of these worries are scarce. In the present study, patients completed the rating form of IBD patient concerns (RFIPC) at three occasions during one year. One-way analysis of variance (ANO VA), t-tests, bivariate correlation, and linear regression analyses were used to analyse data. The validity and reliability of the Norwegian RFIPC was tested. A total of 140 patients were included (V1), ulcerative colitis (UC) n = 92, Crohn's disease (CD) n = 48, mean age 46.9 and 40.0-year old, respectively. The highest rated worries included having an ostomy bag, loss of bowel control, and reduced energy levels. Symptoms were positively associated with more worries. A pattern of IBD-related worries was consistent over a period of one year. Worries about undergoing surgery or having an ostomy bag seemed to persist even when symptoms improved. The Norwegian RFIPC is valid and reliable

The multidimensional fatigue inventory (MFI-20): psychometrical testing in a Norwegian sample of inflammatory bowel disease (IBD) patients

OBJECTIVES To evaluate the psychometric properties of the Norwegian version of the multidimensional fatigue inventory (MFI-20) in patients with inflammatory bowel disease. METHODS Participants were recruited from nine hospitals in the southeastern and western parts of Norway. Clinical and sociodemographic data were collected, and participants completed the MFI-20, as well as the Fatigue Questionnaire (FQ). In addition to a confirmatory factor analysis, validity, reliability, test-retest and responsiveness were evaluated. RESULTS In total, 410 patients were included. The Norwegian MFI-20 had an acceptable model fit when compared to the original five-dimensional structure. A positive correlation was observed between the dimensions of MFI-20 and the FQ. MFI-20 scores increased according to subjective disease activity, but no differences were observed when using a calprotectin cut-off  =250 µg/g mg/kg. All MFI-20 dimensions except ‘reduced motivation’ in both ulcerative colitis (UC) and Crohn’s disease (CD) patients had alpha Cronbach alpha values ≥70, and test-retest reliability revealed good to excellent values. Merely one dimension (Reduced activity) in UC patients reporting improvement did not reach the threshold for acceptable responsiveness according to Guyatt statistics. CONCLUSIONS The Norwegian version of MFI-20 is valid, reliable and responsive. The instrument can safely be used in studies using fatigue as an endpoint.publishedVersio

Risk of Cancer in Patients With Crohn's Disease 30 Years After Diagnosis (the IBSEN Study)

Background: Patients with Crohn's disease (CD) are most often diagnosed as young adults; therefore, long-term studies are needed to assess the risk of cancer over their lifetime. Thus, the aims of the present study were to determine the risk of cancer in a Norwegian population-based cohort (the Inflammatory Bowel South Eastern Norway [IBSEN] study), 30 years after diagnosis, and to assess whether patients with CD were at an increased risk of specific cancer types. Methods: The IBSEN cohort prospectively included all incident patients diagnosed between 1990 and 1993. Data on cancer incidence were obtained from the Cancer Registry of Norway. Overall and cancer-specific hazard ratios (HRs) for CD patients compared with age- and sex-matched controls were modeled using Cox regression. Standardized incidence ratios (SIRs) were estimated compared to the general population. Results: In total, the cohort included 237 patients with CD, and 36 of them were diagnosed with cancer. Compared to the general Norwegian population, patients with CD had an increased overall risk of cancer (HR = 1.56, 95% CI: 1.06-2.28), particularly male patients (HR = 1.85, 95% CI: 1.08-3.16). The incidence of lung cancer and nonmelanoma skin cancer was increased; however, the difference was not statistically significant (SIR = 2.29, 95% CI: 0.92-4.27 and SIR = 2.45, 95% CI: 0.67-5.37, respectively). Conclusions: After 30 years of follow-up, the risk of all cancers in patients with CD was increased compared to the general population. Keywords: Cancer; Crohn’s disease. © The Author(s) 2023. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation.publishedVersio

Incidence of cancer in patients with ulcerative colitis 30 years after diagnosis (the IBSEN study)

Objectives Patients with ulcerative colitis (UC) have shown an increased risk for colorectal cancer, hepatobiliary, hematologic, and skin cancers, but updated long-term data is needed. This study aimed to estimate the risk of cancer in patients with UC compared to the general Norwegian population, in a population-based cohort (the IBSEN study), 30 years after diagnosis; and to identify possible risk factors associated with cancer. Methods The IBSEN cohort prospectively included all incident patients between 1990 and 1993. Cancer incidence data were obtained from the Cancer Registry of Norway. The overall and cancer-specific hazard ratios (HR) were modelled using Cox regression. Standardized incidence ratios were estimated compared to the general population. Results In total, the cohort included 519 patients, and 83 cases were diagnosed with cancer. There was no statistically significant difference in the overall cancer risk (HR = 1.01, 95% CI: [0.79–1.29]) and colorectal cancer risk (HR = 1.37, 95% CI: [0.75–2.47]) between patients and controls. The incidence of biliary tract cancer was higher than expected (SIR = 9.84, 95%CI: [3.19–20.15]), especially when UC patients suffered from primary sclerosing cholangitis. Male UC patients were also more at risk of being diagnosed with hematologic malignancies (HR = 3.48, 95% CI: [1.55–7.82]). Being prescribed thiopurines was associated with a higher risk of cancer (HR = 2.03, 95% CI: [1.02–4.01]). Conclusions At 30 years after diagnosis, the risk of all cancer in patients with UC was not significantly increased compared with the general population. However, the risks of biliary tract cancer and hematologic cancers were increased, particularly in male patients.publishedVersio

Sense of Coherence in Patients with Inflammatory Bowel Disease

Background and Aim. Sense of coherence (SOC) is a health-promoting concept reflecting a person’s view of life and response to stressful situations and may be of importance in coping with chronic illness. The aim of this study was to explore associations between SOC and sociodemographic, disease-related, and personal characteristics in a sample of patients with inflammatory bowel disease (IBD). Methods. Measures included sociodemographic and disease-related data, the Sense of Coherence Scale, General Self-Efficacy Scale (GSE), and Fatigue Severity Scale (FSS-5). Results. In total, 428 IBD patients had evaluable questionnaires (response rate 93%). The overall mean SOC total score was 66.25 (SD 11.47) and with no statistically significant difference between patients with ulcerative colitis (UC) and patients with Crohn’s disease (CD). In the multivariate analyses, higher GSE scores were significantly associated with higher SOC scores and higher FSS-5 scores were significantly associated with lower SOC scores in both UC and CD. Conclusion. GSE and FSS-5 contributed more to the variance in SOC than sociodemographic and disease-related variables. Longitudinal studies are warranted to investigate the value of SOC as a predictor of disability, medication adherence, coping behavior, and health-related quality of life

Sense of Coherence in Patients with Inflammatory Bowel Disease

Background and Aim. Sense of coherence (SOC) is a health-promoting concept reflecting a person's view of life and response to stressful situations and may be of importance in coping with chronic illness. The aim of this study was to explore associations between SOC and sociodemographic, disease-related, and personal characteristics in a sample of patients with inflammatory bowel disease (IBD). Methods. Measures included sociodemographic and disease-related data, the Sense of Coherence Scale, General SelfEfficacy Scale (GSE), and Fatigue Severity Scale (FSS-5). Results. In total, 428 IBD patients had evaluable questionnaires (response rate 93%). The overall mean SOC total score was 66.25 (SD 11.47) and with no statistically significant difference between patients with ulcerative colitis (UC) and patients with Crohn's disease (CD). In the multivariate analyses, higher GSE scores were significantly associated with higher SOC scores and higher FSS-5 scores were significantly associated with lower SOC scores in both UC and CD. Conclusion. GSE and FSS-5 contributed more to the variance in SOC than sociodemographic and disease-related variables. Longitudinal studies are warranted to investigate the value of SOC as a predictor of disability, medication adherence, coping behavior, and health-related quality of life

Self-esteem in patients with inflammatory bowel disease

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Pain Severity and Vitamin D Deficiency in IBD Patients

Pain and vitamin D deficiency are common in inflammatory bowel disease (IBD). Disease activity, fatigue, frequent relapses, prior surgery and psychological factors all seem to influence the experience of pain in IBD. Vitamin D deficiency has been associated with muscle and skeletal pain. This study aimed to determine whether there is an association between vitamin D deficiency and severity of pain in patients with IBD, and to investigate the influence of other socio-demographic and psychological variables on the experience of pain. Methods: Patients with IBD were recruited from nine hospitals in Norway in a multicenter cross-sectional study. The Brief Pain Inventory (BPI) questionnaire was used to measure pain. Disease activity was assessed using clinical disease activity indices, C-reactive protein (CRP) and fecal calprotectin. Regression models were fitted to explore a possible association between 25-hydroxyvitamin D and pain severity. Results: Of 407 patients included in the analyses, 229 (56%) had Crohn's disease (CD) and 178 (44%) had ulcerative colitis (UC). Vitamin D deficiency was present in half (203/407) of patients. Presence of pain was reported by 76% (309/407). More severe pain was associated with female gender and increased disease activity scores, but not with increased CRP or fecal calprotectin. In CD, patients without prior intra-abdominal surgery reported more severe pain. In multivariate analyses, there was no association between 25-hydroxyvitamin D and pain severity. Conclusions: In this study, no significant association between pain severity and vitamin D deficiency was revealed in patients with IBD.publishedVersio

Comprehensive assessment of ECM turnover using serum biomarkers establishes PBC as a high-turnover autoimmune liver disease

Background & Aims: Primary sclerosing cholangitis (PSC), primary biliary cholangitis (PBC) and autoimmune hepatitis (AIH) are phenotypically distinct autoimmune liver diseases that progress to cirrhosis and liver failure; however, their histological fibrosis distribution differs. We investigated the extracellular matrix (ECM) profiles of patients with PSC, PBC, and AIH to establish whether the diseases display differential patterns of ECM turnover. Methods: Serum samples were retrospectively collected from the UK (test cohort; PSC n = 78; PBC n = 74; AIH n = 58) and Norway (validation cohort; PSC n = 138; PBC n = 28; AIH n = 27). Patients with ulcerative colitis without liver disease (n = 194) served as controls. We assessed specific serological biomarkers of ECM turnover: type III and V collagen formation (PRO-C3, PRO-C5), degradation of type III and IV collagen (C3M, C4M), biglycan (BGM) and citrullinated vimentin (VICM). Results: Most of the ECM markers showed elevated serum levels in PBC compared with PSC or AIH (p <0.01). PRO-C3 correlated well with liver stiffness and showed the most striking differences between advanced and non-advanced liver disease; several of the other ECM markers were also associated with stage. PRO-C3 and other ECM markers were inversely associated with ursodeoxycholic acid treatment response in PBC and remission in AIH. All ECM remodelling markers were significantly elevated (p <0.05) in patients with PSC, PBC, or AIH compared with ulcerative colitis. Conclusions: In this first study comparing ECM turnover in autoimmune liver diseases, we found increased ECM turnover in PBC compared with either PSC or AIH. The study indicates that ECM remodelling is different in PSC, PBC, and AIH, suggesting differing opportunities for therapeutic intervention.publishedVersio

Comparison of the Multiattribute Utility Instruments EQ-5D and SF-6D in a Europe-Wide Population-Based Cohort of Patients with Inflammatory Bowel Disease 10 Years after Diagnosis

Background. The treatment of chronic inflammatory bowel disease (IBD) is costly, and limited resources call for analyses of the cost effectiveness of therapeutic interventions. The present study evaluated the equivalency of the Short Form 6D (SF-6D) and the Euro QoL (EQ-5D), two preference-based HRQoL instruments that are broadly used in cost-effectiveness analyses, in an unselected IBD patient population. Methods. IBD patients from seven European countries were invited to a follow-up visit ten years after their initial diagnosis. Clinical and demographic data were assessed, and the Short Form 36 (SF-36) was employed. Utility scores were obtained by calculating the SF-6D index values from the SF-36 data for comparison with the scores obtained with the EQ-5D questionnaire. Results. The SF-6D and EQ-5D provided good sensitivities for detecting disease activity-dependent utility differences. However, the single-measure intraclass correlation coefficient was 0.58, and the Bland-Altman plot indicated numerous values beyond the limits of agreement. Conclusions. There was poor agreement between the measures retrieved from the EQ-5D and the SF-6D utility instruments. Although both instruments may provide good sensitivity for the detection of disease activity-dependent utility differences, the instruments cannot be used interchangeably. Cost-utility analyses performed with only one utility instrument must be interpreted with caution