Disability and Work Issues //

Shafer LA, Walker JR, Chhibba T, Targownik LE, Singh H, Ivekovic M, Bernstein CN. Health care indicators of moderate to severe IBD-related disability; A longitudinal study. Inflammatory Bowel Diseases 2019;25: 1996-2005.

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 greater than or 34). In addition, among those who had at least 1 IBD-related surgery, we determined predictors of low or no postsurgery disability (IBDDI less than 21). We found that 85% required at least 1 IBD-related surgery since diagnosis or had greater than 2 hospitalizations or were ever prescribed corticosteroids or anti-TNF. Surgery was more common in Crohn's disease (55%) than in UC (13%, P < 0.001). High disability was more prevalent among those ever prescribed anti-TNF (49%) vs never prescribed (28%, P < 0.001), those ever prescribed corticosteroids (35%) vs never prescribed (26%, P = 0.02), and those who had had 1 IBD-related surgery (36%) or greater than 1 surgery (53%) vs those who had had none (28%, P < 0.001).

We concluded that 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.


Paulides E, Gearry RB, de Boer NKH, Mulder CJJ, Bernstein CN, McCombie AM. Accommodations and adaptations to overcome workplace disability in inflammatory bowel disease patients: A systematic review. Inflammatory Intestinal Diseases 2019;3(3):138-144.

Inflammatory bowel diseases, are chronic, incurable diseases which are often characterized by unpredictable flares and troubling symptoms which can interfere with a patient’s ability to work. Accommodations in the workplace can help persons with IBD to cope with their illness and work effectively. We systematically reviewed all studies regarding workplace disability in IBD patients. Systematic searches were undertaken on February to March 2018, for the following databases: Pubmed, Medline (Ovid), Cochrane Central Register of Controlled Trials and CINAHL for studies that addressed workplace needs, accommodations and adaptations using survey tools. Of 430 studies screened, 54 met initial eligibility criteria and then six studies were ultimately included, with a total of 7700 participants. Five studies were quantitative, 1 study was qualitative. Common themes were the importance of reasonable adjustments and accommodations in the workplace, mixed with the finding that a significant proportion reported that they had some difficulty arranging accommodations. Adaptations most required were access to a toilet or toilet breaks and time to go to medical appointments. People with IBD often need accommodations, but many do not ask or have difficulty arranging it. Better resources are needed to inform people with IBD about the possibilities for workplace accommodations and practical strategies to request them.

Shafer LA, Walker JR, Restall G, Chhibba T, Ivekovic M, Singh H, Targownik LE, Bernstein CN. Association between IBD Disability and Reduced Work Productivity (Presenteeism): a population-based study in Manitoba, Canada. Inflammatory Bowel Disease 2019 Jan 10;25(2): 352-359.

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. 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, with higher scores representing greater degrees of presenteeism. 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. 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 Stanford Presenteeism Scale, 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 Stanford Presenteeism Scale. Each additional year of disease duration was associated with a reduction in Stanford Presenteeism Scale score of 0.08 (P < 0.01). We concluded that 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.

Shafer LA, Walker JR, Chhibba T, Ivekovic M, Singh H, Targownik LE, Peyrin-Biroulet L, Gower-Rousseau, Sarter H, Bernstein CN. Independent validation of a self-report version of the IBD Disability Index (IBDDI) in a population-based cohort of IBD patients. Inflammatory Bowel Diseases 2018; 24: 766-74.


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. Persons 18-65 years old from the 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 measured how robust this IBDDI performed compared to other indices. In response to the survey request,1143 (46% of those contacted) participated (61% female, average age 51, 52% with Crohn's disease, 48% with ulcerative colitis). On an index scale from 0-100, we considered a score of greater than or equal to 50  to reflect extreme disability. 14% had a score of greater than 50 (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 expected inverse correlation with IBDQ (-0.86). The findings support the validity of this new self-report version of the IBDDI as a sound measure of disability in IBD.

Chhibba T, Walker JR, Sexton K, Restall G, Ivekovic M, Shafer LA, Singh H, Targownik LE, Bernstein CN. Workplace accommodation for persons with IBD: What is needed and what is accessed. 2017; 15:1589-1595.

People with 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 with IBD. Participants were recruited from our University of Manitoba Research Registry and received a survey including questions assessing experiences with workplace accommodations. 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 average age was 48.3 years; 61% were female. The average IBD duration was 20.6 years. 73% of respondents 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. 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.