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Health-related quality of life at diagnosis and follow-up in Faroese and Danish patients with inflammatory bowel disease – a Faroese IBD cohort study

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Quality of life (QoL) in patients with inflammatory bowel disease (IBD) is influenced by several factors, many of which may also impact cognitive function. However, the extent of the interaction among these factors, QoL, and disease outcomes in IBD patients remains unknown. We thus aim to characterize the relationships among psychological disorders, coping mechanisms, cognitive function, and the overall impact on QoL and disease outcomes in patients with IBD. This cross-sectional observational study was conducted at an academic care center. QoL was evaluated using the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), and disease severity was evaluated using the Harvey–Bradshaw Index (HBI) for Crohn’s disease (CD) and the Simple Clinical Colitis Activity Index (SCCAI) for ulcerative colitis (UC). We also used the Hospital Anxiety and Depression scale (HADS). Regression models were used to test the associations among QoL, number of hospitalizations, disease severity, cognitive functioning (working memory [WM] and reaction time), and coping strategies while controlling for anxiety and depressive symptoms, age, and sex. This study included 41 patients (24 patients with CD and 17 with UC) whose mean age was 28.2 (±8.4) years (23 males) and mean SIBDQ score was 51.5 (±10.0). Patients with more WM errors had lower QoL scores ( P = .041), whereas patients with higher anxiety levels had lower QoL and more active UC ( P = .008 and P = .016, respectively). The use of avoidant coping mechanisms was associated with a significantly higher number of hospitalizations ( P = .038), and patients who adopted more emotion-focused coping strategies had a longer illness duration ( P = .021). Finally, patients with higher education levels were found to use more active coping mechanisms than others. These results confirm the impact of cognitive, psychological, and coping factors on QoL and disease outcomes in patients with IBD; however, the mechanisms by which these factors interrelate remain unclear. Therapies aimed at improving both cognitive functions and psychological conditions may thus be effective at improving QoL and disease outcomes in IBD patients, and education may play a positive role in promoting the adoption of more effective coping strategies among IBD patients.
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Background: Coping strategies play a crucial role in managing inflammatory bowel disease (IBD), influencing both health-related quality of life (HRQoL) and psychological well-being. This study systematically reviews the available literature to analyze coping mechanisms in IBD populations and their impact. Methods: Relevant English-language studies published until 2023 were identified through a comprehensive search of PubMed, EMBASE, EBSCOhost, and Cochrane Library. After applying inclusion and exclusion criteria, 57 articles underwent full analysis. Results: The findings highlight the diversity of coping strategies used by individuals with IBD and emphasize the need for a nuanced approach considering factors like disease severity, duration, and individual characteristics. This review underlines the influence of coping mechanisms on QoL and indicates their potential to aid IBD management and rehabilitation. Conclusions: This study underscores the value of investigating coping strategies to promote better outcomes for individuals with IBD. Future research should explore personalized interventions that address the heterogeneity of the IBD population.
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Background: The association between inflammatory bowel disease (IBD) and malignancy remains disputed despite many observational studies. The Faroese population exhibits the highest occurrence of IBD in the world. This study aimed to investigate the cancer risk in Faroese IBD patients in a nationwide IBD cohort. Methods: This study included all IBD patients diagnosed in the Faroe Islands between 1960 and 2020. Clinical demographics and cancer diagnoses were retrieved from patient files and the Faroese cancer registry. Cancer risk in IBD patients was calculated as standardized incidence ratios (SIRs) based on the Faroese background population's age- and sex-specific cancer incidence rates, retrievable from NORDCAN. Results: The cohort consisted of 699 patients with a total follow-up time of 9,629 person-years. Overall, the risk of cancer was not statistically significantly increased compared to the background population. Patients diagnosed with cancer at age 50-59 years had higher overall cancer risk (SIR 1.8; 95% CI, 1.02-2.99) as did UC patients diagnosed with IBD at 50-59 (SIR 2.1; 95% CI, 1.10-3.54). Absolute numbers were small and no estimates for site-specific cancers reached statistical significance, though lung, breast, and cancer of the female reproductive organs were elevated among IBD and UC patients, and colorectal cancer in CD patients. Conclusions: This nationwide study found no statistically significantly increased risk of cancer among Faroese patients with CD or UC, except from age 50 to 59 years. While the incidence of IBD is significantly higher in the Faroe Islands than in other countries, risk estimates of cancers are comparable.
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Background and aims: The highest reported incidence rate of inflammatory bowel disease (IBD), and especially of ulcerative colitis (UC), is found in the Faroe Islands. This study aimed to assess the incidence rate and temporal trends in prevalence over six decades.Methods: All incident and prevalent patients diagnosed with IBD between 1960-2020 from the nationwide and population-based Faroese IBD cohort were included in this study. All patients fulfilled the Copenhagen Diagnostic Criteria. Results: Overall, 873 individuals were diagnosed with IBD during the study period, 559 (64%) with UC, 151 (17%) with CD and 163 (19%) with IBDU. A total of 59 patients had paediatric-onset IBD. The incidence of IBD continued to increase throughout the study period, as the age-standardised incidence rate started at 8 per 100,000 person-years (py) (European Standard Population, ESP) in 1960-79 and reached 70 by 2010-20. In 2021, the age-standardised period prevalence was 1,414 per 100,000 persons. The IBD incidence was unevenly distributed among the islands with Sandoy having the highest rate of 106 per 100,000 py in 2010-2020. Conclusions: The incidence of IBD continues to increase in the Faroe Islands, mainly driven by UC. The incidence presents with an uneven geographical distribution, which suggests an adverse interaction between unknown environmental factors and genetic traits. The prevalence in 2021 corresponded to 1.3% of the Faroese population suffering from IBD. Environmental risk factors are suspected to impact this homogenous high-risk population; however, the reason is unclear.
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Purpose This unselected, population-based cohort study aimed to determine the level of health-related quality of life (HRQoL) in patients with Crohn’s disease (CD) and ulcerative colitis (UC) at the time of diagnosis compared with a reference population and identify the demographic factors, psychosocial measures, and disease activity markers associated with HRQoL. Methods Adult patients newly diagnosed with CD or UC were prospectively enrolled. HRQoL was measured using the Short Form 36 (SF-36) and Norwegian Inflammatory Bowel Disease Questionnaires. Clinical significance was assessed using Cohen’s d effect size and further compared with a Norwegian reference population. Associations between HRQoL and symptom scores, demographic factors, psychosocial measures, and disease activity markers were analyzed. Results Compared with the Norwegian reference population, patients with CD and UC reported significantly lower scores in all SF-36 dimensions, except for physical functioning. Cohen’s d effect sizes for men and women in all SF-36 dimensions were at least moderate, except for bodily pain and emotional role for men with UC and physical functioning for both sexes and diagnoses. In the multivariate regression analysis, depression subscale scores ≥ 8 on the Hospital Anxiety and Depression Scale, substantial fatigue, and high symptom scores were associated with reduced HRQoL. Conclusion Patients newly diagnosed with CD and UC reported statistically and clinically significantly lower scores in seven of the eight SF-36 dimensions than the reference population. Symptoms of depression, fatigue, and elevated symptom scores were associated with poorer HRQoL.
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Objectives We aimed to provide the most updated estimates on the global burden of inflammatory bowel disease (IBD) to improve management strategies. Design We extracted data from the Global Burden of Disease (GBD) 2019 database to evaluate IBD burden with different measures in 204 countries and territories from 1990 to 2019. Setting Studies from the GBD 2019 database generated by population-representative data sources identified through a literature review and research collaborations were included. Participants Patients with an IBD diagnosis. Outcomes Total numbers, age-standardised rates of prevalence, mortality and disability-adjusted life-years (DALYs), and their estimated annual percentage changes (EAPCs) were the main outcomes. Results In 2019, there were approximately 4.9 million cases of IBD worldwide, with China and the USA having the highest number of cases (911 405 and 762 890 (66.9 and 245.3 cases per 100 000 people, respectively)). Between 1990 and 2019, the global age-standardised rates of prevalence, deaths and DALYs decreased (EAPCs=−0.66,–0.69 and −1.04, respectively). However, the age-standardised prevalence rate increased in 13 out of 21 GBD regions. A total of 147 out of 204 countries or territories experienced an increase in the age-standardised prevalence rate. From 1990 to 2019, IBD prevalent cases, deaths and DALYs were higher among females than among males. A higher Socio-demographic Index was associated with higher age-standardised prevalence rates. Conclusions IBD will continue to be a major public health burden due to increasing numbers of prevalent cases, deaths and DALYs. The epidemiological trends and disease burden of IBD have changed dramatically at the regional and national levels, so understanding these changes would be beneficial for policy makers to tackle IBD.
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Introduction Little is known about how U.S. smoking patterns of initiation, cessation, and intensity vary by birth cohort across education levels or how these patterns may be driven by other demographic characteristics. Methods Smoking data for adults aged ≥25 years was obtained from the National Health Interview Surveys 1966–2018. Age-period-cohort models were developed to estimate the probabilities of smoking initiation, cessation, intensity, and prevalence by age, cohort, calendar year, and gender for education levels: ≤8th grade, 9th–11th grade, high school graduate or GED, some college, and college degree or above. Further analyses were conducted to identify the demographic factors (race/ethnicity and birthplace) that may explain the smoking patterns by education. Analyses were conducted in 2020–2021. Results Smoking disparities by education have increased by birth cohort. In recent cohorts, initiation probabilities were highest among individuals with 9th–11th-grade education and lowest among individuals with at least a college degree. Cessation probabilities were higher among those with higher education. Current smoking prevalence decreased over time across all education groups, with important differences by gender. However, it decreased more rapidly among individuals with ≤8th grade education, resulting in this group having the second lowest prevalence in recent cohorts. This may be driven by the increasing proportion of non-U.S. born Hispanics in this group. Conclusions Although smoking is decreasing by cohort across all education groups, disparities in smoking behaviors by education have widened in recent cohorts. Demographic changes for the ≤8th-grade education group need special consideration in analyses of tobacco use by education.
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We tested the causality between education and smoking using the natural experiment of discordant twin pairs allowing to optimally control for background genetic and childhood social factors. Data from 18 cohorts including 10,527 monozygotic (MZ) and same-sex dizygotic (DZ) twin pairs discordant for education and smoking were analyzed by linear fixed effects regression models. Within twin pairs, education levels were lower among the currently smoking than among the never smoking co-twins and this education difference was larger within DZ than MZ pairs. Similarly, education levels were higher among former smoking than among currently smoking co-twins, and this difference was larger within DZ pairs. Our results support the hypothesis of a causal effect of education on both current smoking status and smoking cessation. However, the even greater intra-pair differences within DZ pairs, who share only 50% of their segregating genes, provide evidence that shared genetic factors also contribute to these associations.
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Background The Faroe Islands has the world’s highest incidence of inflammatory bowel disease (IBD). Epidemiological studies have characterized this unique cohort and a decreased risk of developing IBD with emigration. Therefore, this well-characterized Faroese IBD cohort gives the opportunity to better understand this complex disease. This study represents the first investigation of the gut microbiota for the cohort. Methods This cross-sectional study consisted of 41 patients with established ulcerative colitis and 144 age- and sex-matched healthy controls recruited through the Faroe Genome project. Participants donated a 1-time fecal sample and completed questionnaires on food frequency, background health, and lifestyle. 16S rRNA amplicon sequencing of the V3-V4 region was performed followed by bioinformatic analysis of taxonomy and diversity metrics. Results The overall bacterial composition in both groups was dominated by Firmicutes and Bacteroidetes. No significant differences were found based on metrics of alpha or beta diversity. However, discriminatory analysis identified differential abundance of several indicator taxa in healthy controls and ulcerative colitis participants, whereas Akkermansia was completely absent from 27% of all study participants. Food frequency questionnaires revealed similar dietary patterns between the 2 groups. Conclusion The similarity in bacterial community composition and absence of the beneficial Akkermansia genus in both groups raise further questions concerning the underlying susceptibility toward inflammatory disorders within this high-risk population. Results vary widely by study design and geographic location, which speaks to the need for regionally tuned reference groups and disease-based studies on the Faroe Islands.
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Study quality depends on a number of factors, one of them being internal validity. Such validity can be affected by random and systematic error, the latter also known as bias. Both make it more difficult to assess a correct frequency or the true relationship between exposure and outcome. Where random error can be addressed by increasing the sample size, a systematic error in the design, the conduct or the reporting of a study is more problematic. In this paper we will focus on bias, discuss different types of selection bias (sampling bias, confounding by indication, incidence‐prevalence bias, attrition bias, collider stratification bias and publication bias) and information bias (recall bias, interviewer bias, observer bias and lead‐time bias), indicate the type of studies where they most frequently occur and provide suggestions for their prevention. This article is protected by copyright. All rights reserved.
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Background: Previous studies have indicated that disease activity, psychological symptoms and social support were associated with health-related quality of life (HRQoL) in patients with inflammatory bowel diseases(IBD). However, it is unclear how disease activity, psychological symptoms and social support interact to affect HRQoL. The main purpose of this study was to examine the mediation effect of psychological symptoms in the relationship between disease activity, social support and HRQoL. Methods: This was a cross-sectional study, which collected data using convenience sampling, between December 2016 and March 2018, from the Third XiangyaHospital of Central South University in Changsha, China. An online self-administered questionnaire (including demographic and clinical information), Inflammatory Bowel Disease Questionnaire, Disease Activity Indices scale, Hospital Anxiety and Depression Scale and Social Support Rating Scale, were administered to each participant. Descriptive statistics and Pearson's correlations were used to summarize data, whereas PROCESS analysis was performed to examine the pre-specified mediation effect. Results: A total of 199 patients with IBD were included. Disease activity indices (DAI) and hospital anxiety and depression (HAD) were negatively correlated with HRQoL (β = - 3.37, - 2.54 respectively, P < 0.001), while social support was positively correlated with HRQoL (β = 1.38, P < 0.01). HAD partially mediated the negative relationship between DAI and HRQoL (β = - 0.83, P < 0.001) with the mediation effect ratio of 24.6%, and completely mediated the positive relationship between social support and HRQoL (β = 1.20, P < 0.001). Conclusions: Psychological symptoms acted as a mediator in the relationship between disease activity, social support and HRQoL. Interventions to improve HRQoL in patients with IBD should take into account the mediation effect of psychological symptoms.
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Background: The Faroe Islands currently have the highest recorded inflammatory bowel disease (IBD) incidence in the world. Objective: This study investigated environmental risk factors for IBD in the Faroese population. Methods: Environmental exposure data including lifestyle risk factors and neurotoxicants collected for over 30 years were retrieved from the Children's Health and the Environment in the Faroes (CHEF) cohorts including mainly mother-child pairs, with exposure data collected from pregnant mothers. For lifestyle risk factors, the incidence of IBD and ulcerative colitis (UC) was calculated as the rate ratio (RR) with 95% confidence intervals (CI) in exposed versus non-exposed persons. For neurotoxicants RR was calculated for persons with high versus low exposure. Results: Six cohorts included 5698 persons with complete follow-up data and at least one exposure, and 37 were diagnosed with IBD. For pilot whale/blubber, the RR was 1.02 (95% CI, 0.48-2.18); RR of 1.01 for fish (95% CI, 0.35-2.91); and of the pollutants studied, a statistical significantly increased risk was found for 1,1,1,-trichloro-2,2-bis-(p-chlorophenyl) ethane (p,p'-DDT); RR 3.04 (95% CI, 1.12-8.30). RRs were 1.96 (95% CI, 1.03-3.73) for smoking and 1.10 (95% CI, 0.55-2.19) for alcohol intake. Conclusion: The high IBD incidence is unlikely to be caused by special dietary habits or by environmental pollutants.
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Background/aims: Inflammatory bowel disease (IBD) is associated with considerable impairment of patients' health-related quality of life (HRQoL). Knowledge of factors that significantly affect IBD patients' HRQoL can contribute to better patient care. However, the HRQoL of IBD patients in non-Western countries are limited. Hence, we assessed the HRQoL of Singaporean IBD patients and identified its determinants. Methods: A prospective, cross-sectional study was conducted at Singapore General Hospital outpatient IBD Centre. The HRQoL of IBD patients was assessed using the short IBD questionnaire (SIBDQ), Short Form-36 physical and mental component summary (SF-36 PCS/MCS) and EuroQol 5-dimensions 3-levels (EQ-5D-3L) and visual analogue scale (VAS). Independent samples t-test was used to compare HRQoL between Crohn's disease (CD) and ulcerative colitis (UC). Determinants of HRQoL were identified through multiple linear regression. Results: A total of 195 IBD patients (103 UC, 92 CD) with a mean disease duration of 11.2 years were included. There was no significant difference in HRQoL between patients with UC and CD. Factors that significantly worsened HRQoL were presence of active disease (b=-6.293 [SIBDQ], -9.409 [PCS], -9.743 [MCS], -7.254 [VAS]), corticosteroids use (b=-7.392 [SIBDQ], -10.390 [PCS], -8.827 [MCS]), poor medication adherence (b=-4.049 [SIBDQ], -1.320 [MCS], -8.961 [VAS]), presence of extraintestinal manifestations (b=-13.381 [PCS]), comorbidities (b=-4.531 [PCS]), non-employment (b=-9.738 [MCS], -0.104 [EQ-5D-3L]) and public housing (b=-8.070 [PCS], -9.207 [VAS]). Conclusions: The HRQoL is impaired in this Asian cohort of IBD. The magnitude of HRQoL impairment was similar in UC and CD. Clinical characteristics were better determinants of patients' HRQoL than socio-demographic factors. Recognizing the factors that impact patients' HRQoL would improve the holistic management of IBD patients.
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Background: The incidence of inflammatory bowel disease (IBD) is record high in the Faroe Islands, and many Faroese emigrate to Denmark, where the IBD incidence is considerably lower. Aim: To study the IBD incidence in first-, second- and third-generation immigrants from the Faroe Islands to Denmark to assess the extent to which the immigrants adopt the lower IBD incidence of their new home country. Methods: Data on Faroese-born Danish residents and their children were retrieved from the Danish Central Population Register for 1980-2014. Incident IBD cases were identified from the Danish National Patient Register. Standardised Incidence Ratios (SIRs) were used to compare the IBD risk in immigrants with that of Danes. 95% confidence intervals (CI) were calculated using the square-root transform. Results: First-generation Faroese immigrants had a higher IBD incidence than Danes, SIR 1.25 (95% CI, 0.97-1.59) for men and 1.28 (95% CI, 1.05-1.53) for women. This excess risk derived from ulcerative colitis (UC), SIR 1.44 (95% CI, 1.10-1.87) for men and 1.36 (95% CI, 1.09-1.68) for women. No excess risk was found for Crohn's disease (CD). The UC risk was nearly doubled during the immigrants' first 10 years in Denmark; SIR 2.13 (95% CI, 1.52-2.92) for men and 1.63 (95% CI, 1.19-2.18) for women. Conclusions: Although some impact of genetic dilution cannot be excluded, our findings indicate importance of gene-environment interplay in UC, as the excess UC risk in Faroese immigrants to Denmark disappeared over time and over one generation in men and over two generations in women.
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Background & Aims Inflammatory bowel diseases (IBDs) include Crohn’s disease (CD), ulcerative colitis (UC), and IBD unclassified (IBDU). In 2010 and 2011, the ECCO-EpiCom study found the worldwide highest incidence of inflammatory bowel disease (IBD) in the Faroe Islands: 83 per 100,000 (European Standard Population, ESP). The present study assessed the long-term time trends in IBD incidence in the Faroese population. Methods In this population-based study data were retrieved from the National Hospital of the Faroe Islands and included all incident cases of CD, UC and IBDU diagnosed between July 1960 and July 2014. Patients of all ages were included and diagnoses were defined according to the Copenhagen Diagnostic Criteria. Results A total of 664 incident IBD patients were diagnosed: 113 with CD, 417 with UC, and 134 with IBDU. Of these, 51 (8%) were diagnosed with paediatric-onset IBD. Between 1960-79, a total of 55 persons were diagnosed; 105 in 1980-89; 166 in 1990-99; 180 in 2000-09, and 158 in 2010-14. This represented an increase in the age-standardised IBD incidence rate from 7, 25, 40, 42, to 74 per 100,000 (ESP). For CD, the increase was from 1 to 10, for UC from 4 to 44, and for IBDU from 2 to 21 per 100,000 (ESP). Conclusions The high IBD incidence was found to be a relatively new phenomenon. The observed increase is unlikely to be an artefact resulting from, for instance, better registration. Our study indicated a real and increasing disease burden resulting from changing – so far unidentified – exposures.
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Inflammatory bowel disease (IBD) is associated with reduced physical and mental well-being. The first 6 months after diagnosis is an important time in a patient's life with IBD. On top of the physical symptoms, psychological characteristics, such as coping strategies and personality, may contribute to impaired or improved health-related quality of life (HRQOL), anxiety, and depression. This study aimed to measure the stability of coping strategies and personality over the first 6 months after diagnosis and identify the associations of coping strategies and personality traits with the level of HRQOL and degree of anxiety and depression. This study aimed to measure HRQOL, anxiety, depression, IBD symptoms, coping, and personality at baseline and 6 months. Questionnaires about HRQOL, anxiety, depression, IBD symptoms, coping, personality, and demographic information were administered to patients at baseline and 6 months after diagnosis. Personality characteristics were stable over the first 6 months but coping strategies were not. Maladaptive coping strategies were associated with worse outcomes but adaptive coping strategies were not associated with better outcomes. All measures of HRQOL improved. Neuroticism was associated with worse psychological anxiety, depression, and HRQOL outcomes. This is the first study to psychologically test patients with IBD during the first 6 months after diagnosis. Generally, the HRQOL of patients with IBD improves over this time. Maladaptive coping is associated with worse psychological anxiety, depression, and HRQOL physical outcomes; although until an interventional study is performed, reverse causation cannot be ruled out.
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During the past decades there was an increasing predominance of chronic disorders, with a large number of people living with chronic diseases that can adversely affect their quality of life. The aim of the present paper is to study quality of life and especially Health-related quality of life (HRQoL) in chronic diseases. HRQOL is a multidimensional construct that consists of at least three broad domains – physical, psychological, and social functioning – that are affected by one’s disease and/or treatment. HRQoL is usually measured in chronic conditions and is frequently impaired to a great extent. In addition, factors that are associated with good and poor HRQoL, as well as HRQoL assessment will be discussed. The estimation of the relative impact of chronic diseases on HRQoL is necessary in order to better plan and distribute health care resources aiming at a better HRQoL. [«All the people perceive the concept of living good or being well, that is the same as being happy». (Aristotle. 384-322 BC. Ethica Nichomachea)]
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Objective: The incidence of inflammatory bowel disease (IBD) is increasing in Eastern Europe. The reasons for these changes remain unknown. The aim of this study was to investigate whether an East-West gradient in the incidence of IBD in Europe exists. Design: A prospective, uniformly diagnosed, population based inception cohort of IBD patients in 31 centres from 14 Western and eight Eastern European countries covering a total background population of approximately 10.1 million people was created. One-third of the centres had previous experience with inception cohorts. Patients were entered into a low cost, web based epidemiological database, making participation possible regardless of socioeconomic status and prior experience. Results: 1515 patients aged 15 years or older were included, of whom 535 (35%) were diagnosed with Crohn's disease (CD), 813 (54%) with ulcerative colitis (UC) and 167 (11%) with IBD unclassified (IBDU). The overall incidence rate ratios in all Western European centres were 1.9 (95% CI 1.5 to 2.4) for CD and 2.1 (95% CI 1.8 to 2.6) for UC compared with Eastern European centres. The median crude annual incidence rates per 100,000 in 2010 for CD were 6.5 (range 0-10.7) in Western European centres and 3.1 (range 0.4-11.5) in Eastern European centres, for UC 10.8 (range 2.9-31.5) and 4.1 (range 2.4-10.3), respectively, and for IBDU 1.9 (range 0-39.4) and 0 (range 0-1.2), respectively. In Western Europe, 92% of CD, 78% of UC and 74% of IBDU patients had a colonoscopy performed as the diagnostic procedure compared with 90%, 100% and 96%, respectively, in Eastern Europe. 8% of CD and 1% of UC patients in both regions underwent surgery within the first 3 months of the onset of disease. 7% of CD patients and 3% of UC patients from Western Europe received biological treatment as rescue therapy. Of all European CD patients, 20% received only 5-aminosalicylates as induction therapy. Conclusions: An East-West gradient in IBD incidence exists in Europe. Among this inception cohort--including indolent and aggressive cases--international guidelines for diagnosis and initial treatment are not being followed uniformly by physicians.
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Data on the long-term effects of Crohn's disease (CD) on health-related quality of life (HRQoL) is scarce. We aimed to determine the HRQoL in CD patients 10 years after disease onset, to compare the results to the general population and to identify variables that could affect HRQoL. CD patients from a population-based inception cohort (the IBSEN Study) met at a prescheduled ten-year follow-up. In addition to a structured interview, review of hospital records, clinical examination, laboratory tests and ileocolonoscopy, they completed a patient-reported questionnaire including the Short Form 36 (SF-36) and the Norwegian Inflammatory Bowel Disease Questionnaire (N-IBDQ). The SF-36 scores were compared to scores from the general population 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. Ninety-nine patients completed the HRQoL questionnaires (response rate 86%). Median age 39 years, 42% women. Compared to the general population the patients reported significantly lower SF-36 scores on the general health and vitality dimensions. IBDQ total scores were in line with scores of patients in remission. Except for current symptom severity no clinical parameters affected HRQoL scores. Work status and sick leave affected HRQoL negatively. In this chronic stage of CD, reduced general health and vitality scores need attention while reductions in disease specific HRQoL seem to be less predominant.
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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. 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. 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. 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.
Article
Background Increased mortality rates have been found in patients suffering from inflammatory bowel disease (IBD). The Faroe Islands have the highest occurrence of IBD, mainly ulcerative colitis (UC). This study investigated mortality of patients with IBD compared with the general Faroese population. Methods All patients diagnosed with IBD from 1966-2020 were included, as well as population mortality data. All-cause and cause-specific mortality in the IBD cohort was compared with the population by standardized incidence ratios (SIRs). Risk factors for death within the cohort were assessed by hazard ratios (HRs) using Cox regression. Results Overall mortality was not increased in patients with Crohn’s disease (CD; SIR 0.9; 95% confidence interval [CI], 0.56-1.35) or UC (SIR 1.0; 95% CI, 0.83-1.25). However, patients with UC had an elevated risk of dying from digestive diseases (SIR 4.3; 95% CI, 2.16-7.74). Patients with IBD had lower risk of death of cardiovascular diseases compared with the background population (SIR 0.7; 95% CI, 0.50-0.93). Risk factors for mortality included male gender, age at diagnosis, and use of steroids. Protective factors were use of 5-aminosalicylic acid (5-ASA), thiopurines, and biological treatment. Conclusions No increased risk of all-cause mortality in patients with CD or UC was found in this nationwide study compared with the entire Faroese population over more than 5 decades. The risk of death due to digestive diseases was, however, increased in patients with UC, while mortality risk of cardiovascular diseases was lower in patients with IBD.
Article
Inflammatory bowel diseases (IBD) are systemic disease that manifest not only in the gut/GI tract but also in many patients in extraintestinal organs. The quality of life of IBD patients may be significantly affected by those extraintestinal manifestations (EIMs). It is important to have knowledge of the prevalence, pathophysiology and clinical presentation of EIMs in order to adapt therapeutic options to cover all aspects of IBD. EIMs may occur in up to 24% of IBD patients before the onset of intestinal symptoms and need to be recognized to initiate appropriate diagnostic procedures. EIMs most frequently affect joints, skin, or eyes, but may also affect other organs such as the liver, lung and pancreas. It is a frequent misconception that a successful therapy of the intestinal inflammation will be sufficient to treat EIMs satisfactorily in the majority of IBD patients. In general, peripheral arthritis, oral aphthous ulcers, episcleritis, or erythema nodosum may be associated with active intestinal inflammation and may improve upon standard treatment of the intestinal inflammation. On the other hand, anterior uveitis, ankylosing spondylitis (AS) and primary sclerosing cholangitis (PSC) usually occur independent of disease flares. This review provides a comprehensive overview of epidemiology, pathophysiology, clinical presentation and treatment of EIMs in IBD.
Article
Background: Crohn's disease (CD) and ulcerative colitis (UC) are associated with reduced health-related quality of life (HRQoL), but findings differ between studies. The aim of this study was to analyse the impact of disease activity and social factors on HRQoL. Method: A total of 513 patients diagnosed with UC and CD between 2003 and 2004, in a population-based setting, were followed for 7 years. HRQoL was assessed using the Short Form-12, the Short Inflammatory Bowel Disease (IBD) Questionnaire (SIBDQ), the Work Productivity and Activity Impairment Questionnaire: General Health and a national health survey. Associations were assessed using multiple linear regressions. Results: A total of 185 of the eligible patients (UC: 107 (50.2%) and CD: 78 (50.3%)) were included. No differences in disease-specific or generic HRQoL were found between CD and UC patients, and IBD patients did not differ compared with the background population. The majority of CD (73.1%) and UC (85.0%) patients had 'good' disease-specific HRQoL using the SIBDQ. Unemployment for ≥ 3 months occurred more in CD vs UC patients(30.6 vs 15.5%, p = 0.03); however, sick leave for ≥ 3 months did not differ significantly (17.4 vs 11.4%, p = 0.4). Using multiple linear regressions, unemployment, sick leave and disease activity were the factors most frequently associated with reduced HRQoL. Conclusion: In a population-based cohort with 7 years of follow-up, HRQoL did not differ between patients and the background population.
Article
Background Psychiatric comorbidity in inflammatory bowel disease (IBD) is well known; however, data from a truly representative sample are sparse. We aimed to estimate the incidence and prevalence of psychiatric disorders in an IBD cohort compared with a matched cohort without IBD. Methods Using population-based administrative health data from Manitoba, Canada, we identified all persons with incident IBD from 1989 to 2012 and a general population matched cohort (5:1). We applied validated algorithms for IBD, depression, anxiety disorders, bipolar disorder, and schizophrenia to determine the annual incidence of these conditions post–IBD diagnosis and their lifetime and current prevalence. Results There were 6119 incident cases of IBD and 30,573 matched individuals. After adjustment for age, sex, socioeconomic status, region of residence, and year, there was a higher incidence in the IBD cohort compared with controls for depression (incidence rate ratio [IRR], 1.58; 95% confidence interval [CI], 1.41–1.76), anxiety disorder (IRR, 1.39; 95% CI, 1.26–1.53), bipolar disorder (IRR, 1.82; 95% CI, 1.44–2.30), and schizophrenia (IRR, 1.64; 95% CI, 0.95–2.84). Incidence rate ratios were similar for Crohn’s disease and ulcerative colitis between males and females and were stable over time. However, within the IBD cohort, the incidence rates of depression, anxiety, and bipolar disorders were higher among females, those aged 18–24 years vs those older than 44 years, urbanites, and those of lower socioeconomic status. The lifetime and current prevalence rates of psychiatric disorders were also higher in the IBD than the matched cohort. Conclusions The incidence and prevalence of psychiatric disorders are elevated in the IBD population.
Article
Background Quality of life (QoL) is commonly assessed in inflammatory bowel disease (IBD); the relationship of QoL within IBD states and relative to others has not been comprehensively evaluated. This systematic review, published across 2 papers, evaluates 5 key QoL comparisons. Part I, presented here, examines between-disease comparisons: (1) IBD/healthy(general) population and (2) IBD/other medically ill groups. Part II examines within-disease comparisons: (3) active/inactive disease, (4) ulcerative colitis/Crohn’s disease, and (5) change over time. Outcomes using generic vs IBD-specific QoL measures were also examined. Methods Adult and pediatric studies were identified through systematic searches of 7 databases from the 1940s (where available) to October 2015. Results Of 6173 abstracts identified, 466 were selected for final review based on controlled design and validated measurement; 30 unique studies (23 adult, 7 pediatric) addressed the between-disease comparisons. The pooled mean QoL scores were (1) lower in adult and pediatric IBD samples compared with healthy controls (n = 19), and for both mental and physical QoL, where measured; and (2) higher but not significant for those with IBD compared with various medically ill controls (n = 15). Findings were consistent across IBD-specific and generic QoL measures. Study quality was generally low to moderate. The most common measures of QoL were the disease-specific Inflammatory Bowel Disease Questionnaire and generic SF-36 (adults), and the generic PedsQL (children). Conclusions There was robust confirmation that QoL for individuals with IBD was poorer than for healthy individuals, for both adults and children. QoL in IBD may be better relative to some other gastrointestinal (GI) and non-GI medical conditions for children.
Article
Background: Inflammatory bowel disease is a global disease in the 21st century. We aimed to assess the changing incidence and prevalence of inflammatory bowel disease around the world. Methods: We searched MEDLINE and Embase up to and including Dec 31, 2016, to identify observational, population-based studies reporting the incidence or prevalence of Crohn's disease or ulcerative colitis from 1990 or later. A study was regarded as population-based if it involved all residents within a specific area and the patients were representative of that area. To be included in the systematic review, ulcerative colitis and Crohn's disease needed to be reported separately. Studies that did not report original data and studies that reported only the incidence or prevalence of paediatric-onset inflammatory bowel disease (diagnosis at age <16 years) were excluded. We created choropleth maps for the incidence (119 studies) and prevalence (69 studies) of Crohn's disease and ulcerative colitis. We used temporal trend analyses to report changes as an annual percentage change (APC) with 95% CI. Findings: We identified 147 studies that were eligible for final inclusion in the systematic review, including 119 studies of incidence and 69 studies of prevalence. The highest reported prevalence values were in Europe (ulcerative colitis 505 per 100 000 in Norway; Crohn's disease 322 per 100 000 in Germany) and North America (ulcerative colitis 286 per 100 000 in the USA; Crohn's disease 319 per 100 000 in Canada). The prevalence of inflammatory bowel disease exceeded 0·3% in North America, Oceania, and many countries in Europe. Overall, 16 (72·7%) of 22 studies on Crohn's disease and 15 (83·3%) of 18 studies on ulcerative colitis reported stable or decreasing incidence of inflammatory bowel disease in North America and Europe. Since 1990, incidence has been rising in newly industrialised countries in Africa, Asia, and South America, including Brazil (APC for Crohn's disease +11·1% [95% CI 4·8-17·8] and APC for ulcerative colitis +14·9% [10·4-19·6]) and Taiwan (APC for Crohn's disease +4·0% [1·0-7·1] and APC for ulcerative colitis +4·8% [1·8-8·0]). Interpretation: At the turn of the 21st century, inflammatory bowel disease has become a global disease with accelerating incidence in newly industrialised countries whose societies have become more westernised. Although incidence is stabilising in western countries, burden remains high as prevalence surpasses 0·3%. These data highlight the need for research into prevention of inflammatory bowel disease and innovations in health-care systems to manage this complex and costly disease. Funding: None.
Article
Background and aims Smoking affects the course of inflammatory bowel disease (IBD). We aimed to study the impact of smoking on IBD-specific costs and health-related quality-of-life (HrQoL) among adults with Crohn’s disease (CD) and ulcerative colitis (UC). Methods A large cohort of IBD patients was prospectively followed during one year using three-monthly questionnaires on smoking status, health resources, disease activity and HrQoL. Costs were calculated by multiplying used resources with corresponding unit prices. Healthcare costs, patient costs, productivity losses, disease course items and HrQoL were compared between smokers, never-smokers and ex-smokers, adjusted for potential confounders. Results In total, 3,030 patients (1,558 CD, 1,054 UC, 418 IBD-unknown) were enrolled; 16% smoked at baseline. In CD, disease course was more severe amongst smokers. Smoking was associated with >30% higher annual societal costs in IBD (€7,905 (95% CI €6,234 – €9,864) vs. €6,017 (€5,186 – €6,946) in never-smokers and €5,710 (€4,687 – €6,878) in ex-smokers, p=0.06 and p=0.04, respectively). In CD, smoking patients generated the highest societal costs, primarily driven by the use of anti-TNF compounds. In UC, societal costs of smoking patients were comparable to those of non-smokers. Societal costs of IBD patients who quitted smoking >5 years prior to inclusion were lower than in patients who quitted within the last 5 years (€ 5,135 (95% CI €4,122 – €6,303) vs. €9,342 (€6,010 – €12,788), p=0.01). In both CD and UC, smoking was associated with a lower HrQoL. Conclusions Smoking is associated with higher societal costs and lower HrQoL in IBD patients. Smoking cessation may result in considerably lower societal costs.
Article
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. The EpiCom inception cohort consists of 1560 IBD patients from 31 European centres covering a background population of approximately 10.1million. 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. In total, 1079 patients were included in this study. Crohn's 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. 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.
Article
The importance of fatigue in chronic disease has been increasingly recognized; however, little is known about fatigue in inflammatory bowel disease (IBD). The aim of the present study was to investigate the prevalence and severity of fatigue and the impact on health-related quality of life (HRQoL) in patients included in a population-based IBD cohort in the Netherlands. IBD patients, diagnosed between January 1st, 1991, and January 1st, 2003, were followed up for a median of 7.1 years. They completed a questionnaire, which included a disease activity score, the Multidimensional Fatigue Inventory (MFI-20), the Inflammatory Bowel Disease Questionnaire (IBDQ), and the Short Form health survey (SF-36). Hemoglobin levels were recorded. Data were available in 304 Crohn's disease (CD), 368 ulcerative colitis (UC), and 35 indeterminate colitis (IC) patients. During quiescent disease, the prevalence of fatigue was nearly 40%. MFI-20 and HRQoL scores were significantly worse in IBD patients having active disease. In a multivariate analysis, disease activity was positively related with the level of fatigue in both CD and UC. In UC, anemia influenced the general fatigue score independently of disease activity. Disease activity as well as fatigue were independently associated with an impaired IBDQ. In IBD, even in remission, fatigue is an important feature. Both in CD and in UC, fatigue determined HRQoL independently of disease activity or anemia. This implies that in IBD patients physicians need to be aware of fatigue in order to better understand its impact and to improve the HRQoL.
Article
Health-related quality of life (HRQOL) affects outcome in chronic diseases such as inflammatory bowel disease (IBD). The inflammatory bowel disease questionnaire (IBDQ), a disease-specific HRQOL questionnaire, can define changes in health status in IBD, but simple instruments are needed for daily application. The present study proposed to develop a short version of the IBDQ, the SIBDQ, for community physicians. Using data from a clinical trial in 149 patients with Crohn's disease, 10 items were selected (by forward stepwise regression) that best explained the variance of the IBDQ or dimensional scores (bowel, systemic, social, emotional). The validity, reliability, and responsiveness of the SIBDQ were then assessed in 150 different patients with Crohn's disease and 45 with ulcerative colitis. All scores were reported with a 7-point scale (1 = poor HRQOL, 7 = optimum HRQOL). Mean SIBDQ scores were similar (p = 0.22) in Crohn's patients among 14 participating centers at study entry. Mean scores were lower in active Crohn's disease (range 4.00-4.92) than inactive disease (range 4.67-5.83; p = 0.0015). In active ulcerative colitis, the mean SIBDQ was 4.79 +/- 1.17 compared to 5.90 +/- 0.80 (p = 0.0006) in inactive disease. The SIBDQ explained 92% and 90% of the IBDQ variance in Crohn's disease and ulcerative colitis, respectively. In patients with stable Crohn's disease, the test-retest reliability coefficient was 0.65 and Crohnbach's alpha was 0.78, indicating good reliability. In patients with Crohn's disease who relapsed during follow-up, the mean SIBDQ decreased by -0.93 + 0.55 (p = 0.001). The SIBDQ is valid, reliable, and able to detect meaningful clinical changes in HRQOL that might occur in the office setting.
Article
The inflammatory bowel disease questionnaire (IBDQ) is a frequently used outcome parameter in clinical trials. Whereas the validity and reproducibility of the IBDQ have been extensively studied, there are limited data on its short-term responsiveness and cutoff values for remission and partial clinical response. The IBDQ score and its bowel (BD), systemic (SysD), emotional (ED), and social (SocD) dimensions were tested for responsiveness in a cohort of 224 patients with Crohn's disease (CD) treated with infliximab for refractory luminal disease. Changes in the IBDQ score and its dimensions 4 weeks after therapy were analyzed and correlated with changes in the Crohn's Disease Activity Index (CDAI). The responsiveness ratios of the IBDQ and its dimensions were analyzed. Using regression line with DeltaCDAI, the cutoff values for the IBDQ remission and response were calculated. Overall, there was a good correlation between the CDAI and IBDQ at week 0 (correlation coefficient, 0.69; P < .001) and week 4 (-0.76; P < .001) and change after 4 weeks (0.74; P < .001). The correlation coefficients for DeltaCDAI and changes in BD, SysD, ED, and SocD were 0.753, 0.552, 0.620, and 0.631, respectively; all P < 0.001. The responsiveness ratios for DeltaIBDQ, BD, SysD, ED, and SocD were 2.6, 2.1, 1.9, 1.7, and 1.9, respectively. Regression line for the IBDQ (r = -0.76, P < .001) resulted in a cutoff value for remission of 168 points and for DeltaIBDQ resulted in a cutoff value of 22 and 27 points for clinical improvement based on DeltaCDAI > or = -70 and > or = -100 points. The IBDQ is a responsive instrument for reflecting quick change in the quality of life of patients with CD. Cutoff values for the IBDQ remission and partial response were 168 and > or = 27 points.
Multidimensional patient-reported outcomes and quality of life at diagnosis of IBD: a population-based inception cohort study
  • M Attauabi
  • G R Madsen
  • F Bendtsen
  • Attauabi M
Smoking -one of the biggest threats to public health in the Nordic region
  • Nordic Welfare Centre
Nordic Welfare Centre. Smoking -one of the biggest threats to public health in the Nordic region; 2024. https://nordicwelfare.org/en/ nyheter/smoking-one-of-the-biggest-threats-to-public-healthin-the-nordic-region/
Health-related quality of life of patients with inflammatory bowel disease in Singapore
  • Min Ho
  • P Y Hu
  • W Lee
Min Ho PY, Hu W, Lee YY, et al. Health-related quality of life of patients with inflammatory bowel disease in Singapore. Intest Res. 2019;17(1):107-118. doi: 10.5217/ir.2018.00099.