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We aimed to determine how health care utilization indicators in IBD that reflect moderate to severe disease relate to disability later in life.Persons in the population-based University of Manitoba IBD Research Registry completed a survey and gave permission to access their Manitoba Health records. Of 2478 people in the Registry aged 18 to 65 years, 854 participated between April 2015 and March 2016. The survey included the IBD Disability Index (IBDDI). The health data included surgeries and hospitalizations since 1984 and prescriptions since 1995. We explored the association between indicators of moderate to severe disease (ie, surgeries, hospitalization, and new corticosteroids and anti-tumor necrosis factor [anti-TNF] prescriptions) and high IBD-related disability (IBDDI ≥35). In addition, among those who had at least 1 IBD-related surgery, we determined predictors of low or no postsurgery disability (IBDDI21).Eighty-five percent required at least 1 IBD-related surgery since diagnosis or had2 hospitalizations or were ever prescribed corticosteroids or anti-TNF. Surgery was more common in Crohn's disease (55%) than in UC (13%, P0.001). High disability was more prevalent among those ever prescribed anti-TNF (49%) vs never prescribed (28%, P0.001), those ever prescribed corticosteroids (35%) vs never prescribed (26%, P = 0.02), and those who had had 1 IBD-related surgery (36%) or1 surgery (53%) vs those who had had none (28%, P0.001).Health care utilization indicators of moderate to severe disease (ie, surgeries, hospitalizations, corticosteroid or anti-TNF use) were associated with subsequent higher IBD-related disability. Persons experiencing those indicators should be followed more closely for social, mental, and physical consequences of IBD-related disability. Previous health care utilization can serve as a proxy for IBD-related disability.

Background One effect of IBD disability is reduced productivity when at work (presenteeism). We explored potential predictors of work presenteeism and compared the predictive ability of the recently developed IBD Disability Index (IBDDI) with 4 other scales in predicting presenteeism. Methods Participants (aged 18-65 years) were recruited from the University of Manitoba IBD Research Registry. We calculated a presenteeism score (range, 0-24) from the Stanford Presenteeism Scale (SPS), with higher scores representing greater degrees of presenteeism. Using receiver operating characteristic curves and linear regression, we explored associations between presenteeism and the IBDDI, the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the Work and Social Adjustment Scale (WSAS), the Inflammatory Bowel Disease Questionnaire (IBDQ), and the Kessler-6 (K6) distress scale. Results Out of 744 respondents working at least half-time (20+ hours/wk), 472 (63%) reported no reduced productivity in the previous 14 days. Reduced productivity was reported for 1-2 days by 131 (18%), for 3-9 days by 119 (16%), and on most days by 22 (3%). When predicting the SPS, similar model fits were found for the IBDDI, WHODAS, WSAS, IBDQ, and K6. Each increase of 10 on the IBDDI score was associated with an increase of 2.19 (95% confidence interval, 2.00-2.37) on the SPS. Each additional year of disease duration was associated with a reduction in SPS score of 0.08 (P < 0.01). Conclusions More than one-third of persons with IBD report presenteeism. We found strong associations between presenteeism and disability, lower quality of life, and emotional distress. The IBDDI performs equally as well as the more established scales in predicting presenteeism.

Background We aimed to explore factors associated with health service utilization and preference for services, including alternatives to attending the emergency department (ED) when experiencing mild to moderate or severe symptoms. Methods A total of 1143 persons (46% response rate) aged 18 to 65 years in the population-based University of Manitoba IBD Research Registry participated in the survey. Results Although 61% had a gastroenterologist, when experiencing active symptoms, only 29% felt they could call their gastroenterologist for an urgent appointment, and 42% could call their gastroenterologist for telephone advice. Nine percent of the respondents visited the ED in the previous year. If having severe symptoms, 48% said that they would attend the ED. Visits to the ED were related to higher bowel symptom severity and high health anxiety. When experiencing severe symptoms, women, persons with Crohn's disease and those with high health anxiety, indicated that they would be more likely to use the ED. Considering services which could be available in the future respondents indicated that if acutely symptomatic they would be very likely or likely to use the following services: phone contact with inflammatory bowel disease nurse (77%), phone contact with a gastroenterologist (75%), and going to a walk-in gastroenterology clinic (71%). Conclusions Persons with inflammatory bowel disease are receptive to options other than the ED when experiencing inflammatory bowel disease symptoms; however, attending the ED remains a prominent choice. Improved access to specialized care may improve timeliness of care and reduce ED attendance. Future research should include the impact of health anxiety on health care utilization.

Background & Aims People with inflammatory bowel disease (IBD) often experience periods of illness that interfere with their ability to work. We aimed to understand the need for workplace accommodation during periods of acute illness among persons IBD. Methods Participants were recruited from the population-based University of Manitoba Research Registry and received a survey including questions assessing experiences with workplace accommodations. Data were analyzed using descriptive statistics and multivariate logistic regression modelling. Results A total of 1143 individuals responded to the survey (46% response rate), of whom 881 had experienced IBD symptoms in the workplace and were included in the analysis. The mean age was 48.3 years (standard deviation, 10.9); 61% were female. Mean IBD duration was 20.6 years (standard deviation, 10.5). Most respondents (73%) described IBD symptoms experienced in the workplace as severe to very severe. The most commonly required accommodations were time to go to medical appointments during working hours (81%), easy access to a toilet (71%), and a chance to take a break when not feeling well (54%). Most accommodations were arranged informally or through a supervisor. The accommodations required were very or somewhat easy to arrange about half the time. Being female, having high symptom severity, and high level of current distress were associated with a need for more accommodations, difficulty implementing accommodations, and not asking for needed accommodations. Conclusions This study provides important information as to the types of accommodations that are necessary, common practices arranging for these, and level of difficulty arranging accommodations. Furthermore, characteristics associated with greater need for accommodation, reluctance to ask for them, and difficulty in arranging them were identified.

Introduction A new clinician-administered inflammatory bowel disease (IBD) Disability Index (IBDDI) was recently developed and validated among a population in France. We aimed to validate the IBDDI in a North American setting and adapt for use as a self-report tool. Methods Persons 18-65 years old from the population-based University of Manitoba IBD Research Registry were mailed a self-administered survey. This survey included the IBDDI and several scales that should correlate with a disability measure- the World Health Organization (WHO) Disability Assessment Scale (WHODAS) 2.0, Work and Social Adjustment Scale (WSAS), the Inflammatory Bowel Disease Questionnaire (IBDQ), and the K6-Kessler Emotional Distress Scale. We used Pearson correlation coefficients to assess construct validity, Cronbach's alpha to assess internal consistency, and Factor analysis to assess which of the IBDDI items likely belonged to a single IBD-related disability factor. Results In response to the survey request,1143 (46% of those contacted) participated (61% female, mean age 51, 52% with Crohn's disease). On an index scale from 0-100, 14% had a score ≥50 (extreme disability, 18% of those with Crohn's disease; 10% of those with ulcerative colitis). There were strong correlations between IBDDI and WSAS (0.76), WHODAS (0.76), K6 (0.73), and an inverse correlation with IBDQ (-0.86). The Cronbach's alpha was high (0.88). All but 2 items (number of liquid stools in the past week and arthritis/arthralgia) of the 14 identified for IBDDI loaded highly onto a single factor (factor loading > 0.40). Conclusions The findings support the validity of this new self-report version of the IBDDI as a sound measure of disability in IBD.