Publications

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Shafer LA, Shaffer S, Witt J, Nugent Z, Bernstein CN. IBD Disability Index (IBDDI) is associated with both direct and indirect costs of inflammatory bowel disease. Inflammatory Bowel Diseases 2022; 28(8):1189-1197.

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We aimed to determine both direct (medical) and indirect (lost wages) costs of IBD, and the association between the degree of IBD-related disability and extent of IBD-related costs. Persons aged 18-65 from the population-based University of Manitoba IBD Research Registry completed a survey including the IBD Disability Index (IBDDI) and questions related to employment, missed work (absenteeism), and reduced productivity at work (presenteeism). Administrative health data including surgeries, hospitalizations, physician claims, and prescriptions were linked to the survey and assessed. To calculate annual wage loss, number of days of missed work was multiplied by the average wage in Manitoba for the given occupation per Statistics Canada. Costs were adjusted to 2016-17 Canadian dollars. Using descriptive and regression analysis, we explored the association between IBDDI and annual direct and indirect costs associated with IBD. Average annual medical costs rose from $1,918 among those with IBDDI 0-4 to $9,993 among those with IBDDI 80-86. Average annual cost of lost work rose from $0 among those with IBDDI 0-4 to $30,101 among those with IBDDI 80-86. Using linear regression, each additional unit of IBDDI was associated with an increase of $77 in annual medical cost (95% C.I. $52-102; p<0.001) and an increase of $341 in annual cost of lost wages (95% C.I. $288-395; p<0.001).

 

We concluded that IBD-related costs are significantly associated with the degree of IBD-related disability. Among the approximate 30% of the IBD population with IBDDI scores greater than 40, the indirect costs of absenteeism and presenteeism accounts for ~75% of the total IBD-related costs.

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Shafer LA, Sofia MA, Rubin DT, Steinhart AH, Ng SC, Reches L, Israeli E, Bernstein CN. An International Multicentre Comparison of IBD Related Disability and Validation of the IBDDI. Clinical Gastroenterology and Hepatology 2020; 19:2524-2531.

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The IBD disability index (IBDDI) has been shown to be valid and reliable. We compared the distributional and predictive properties of the IBDDI, when collected from five populations of people living with IBD- from Winnipeg, Chicago, Toronto, Hong Kong, and Jerusalem. People with IBD from 5 jurisdictions were invited to complete a survey including the IBDDI, the World Health Organization Disability Assessment Scale, the Work and Social Adjustment Scale, the IBDQ, the Kessler-6 distress scale, and the Stanford presenteeism scale. Between sites, we compared the correlation between IBDDI and the other 4 measures of disability/quality of life/distress, and the association between IBDDI and presenteeism and having been hospitalized in the past year. There were 1121 participants from Winnipeg, 511 from Chicago, 147 from Toronto, 97 from Hong Kong, and 96 from Jerusalem. The majority had Crohn's disease. Although the mean IBDDI score varied by site, the correlation between IBDDI and each of the other 4 measures of disability/QOL/distress was nearly identical. Similarly, the regression coefficient showing the association between IBDDI and presenteeism was nearly identical in all sites, and the risk ratios showing the association between hospitalization and high IBDDI was similar in all sites.

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We concluded that the correlation between IBDDI and different measures of disability/QOL/distress was similar across all sites. There is strong evidence of the association between IBD-related disability and presenteeism, and between hospitalization and high IBD-related disability, and that the associations are the same across different populations. The severity of disability that an individual with a given IBDDI score has is directly comparable across populations.

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Paulides E, Daker C, Frampton C, Gearry RB, Eglinton T, de Boer NKH, Bernstein CN, McCombie AM. Overcoming Workplace Disability in IBD Patients: An Observational Study. Inflammatory Intestinal Diseases 2020 Jun;5(2):84-92. 

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We aimed to investigate the impact of IBD in the workplace and to better understand the need for accommodations and adaptations. Between November 2017 and March 2018, IBD patients were recruited from outpatient clinics in Christchurch Hospital, New Zealand. The survey assessed employment, the need for workplace accommodations and the difficulty arranging it, insurance, and disability using the item-reduced Inflammatory Bowel Disease Disability Index for self-report (IBD-DI-SR). Data were analyzed using descriptive statistics and multivariate logistic regression modeling. 123 patients were included (response rate 64%), 112 of whom reported that they experienced symptoms while working (60% female, 71% Crohn's disease, mean age 41.9 years). 91% needed at least 1 workplace accommodation when symptoms were most severe. Almost half of the patients who needed an accommodation had difficulty arranging it. The most needed accommodations were time to go to medical appointments (71%) and easy access to a suitable toilet (71%). Being female, having less effective medication, and being distressed were associated with the need for 2 or more accommodations, difficulty in arranging accommodations, and not asking for needed accommodation.

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We concluded that many IBD patients need accommodations at work while symptomatic in order to overcome workplace disability, which can be difficult to arrange. Improved resources are needed to inform employees and employers about the disease, the possibilities for workplace accommodations, and practical strategies to request them.

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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.

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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 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.

 

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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