Curr Gastroenterol Rep (2014) 16:414 DOI 10.1007/s11894-014-0414-0
INFLAMMATORY BOWEL DISEASE (S HANAUER, SECTION EDITOR)
Impact of Inflammatory Bowel Disease on Disability Katharina Büsch & Amnon Sonnenberg & Nick Bansback
Published online: 18 September 2014 # Springer Science+Business Media New York 2014
Abstract Inflammatory bowel disease can impact individuals at a young age, thus compromising their work productivity. Besides the inability to engage in gainful work, the concept of disability also relates to the patients’ diminished ability to undertake household and social activities. A literature search was performed of recent literature, and all articles containing information about the impact of inflammatory bowel disease on disability or any work-related outcomes were included. Recent studies suggest that 9 to 19 % of inflammatory bowel disease patients suffer from short-term absences from work and 19 to 22 % are on long-term disability. Crohn’s disease
patients reported being more affected by their disease than ulcerative colitis patients. A comparison of results from different studies is difficult due to the lack of consensus on how to define and measure disability. Additional research is needed to better quantify disability in inflammatory bowel disease patients.
This article is part of the Topical Collection on Inflammatory Bowel Disease
Introduction
K. Büsch (*) Clinical Epidemiology Unit, Department of Medicine, Karolinska Institutet, 171 76 Stockholm, Sweden e-mail: [email protected]
The term disability constitutes a complex, dynamic, and multidimensional concept that is used as an umbrella term for a variety of physical impairments, activity limitations, and restrictions in social participation [1••]. Information about disability is an important component in the assessment of health care because it reflects on a patient’s ability to undertake daily activities, such as paid employment and caring for children or relatives [1••, 2•, 3]. Along with traditional indicators of a population’s health status, disability has become crucial in measuring disease burden, evaluating the effectiveness of health interventions, and planning health policy [4]. Inflammatory bowel disease, which includes Crohn’s disease and ulcerative colitis, can affect individuals at a young age [5]. The disease can impact people’s ability to work [6•] and can therefore lead to high societal costs due to sick leave and disability pension [7]. The majority of studies related to disability in patients with inflammatory bowel disease have focused on work and employment [7]. Fewer studies have explored the impact of inflammatory bowel disease on broader aspects such as the chronic limitations that preclude the ability to engage in all daily activities such as social interactions [2•].
K. Büsch e-mail: [email protected] A. Sonnenberg Portland VA Medical Center, Portland, OR, USA e-mail: [email protected] A. Sonnenberg Oregon Health and Science University, Portland, OR, USA N. Bansback School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada e-mail: [email protected] N. Bansback Centre for Clinical Epidemiology and Evaluation, Vancouver Coastal Research Institute, Vancouver, BC, Canada N. Bansback Centre for Health Evaluation and Outcome Sciences, St. Paul’s Hospital, Vancouver, BC, Canada
Keywords Absenteeism . Crohn’s disease . Disability pension . Long-term disability . Presenteeism . Sick leave . Short-term disability . Ulcerative colitis . Work cessation
414, Page 2 of 9
Curr Gastroenterol Rep (2014) 16:414
The purpose of this review is to explore the recent published evidence regarding the impact of inflammatory bowel disease on disability among multiple domains, including short-term absence from work (e.g., sick leave), long-term disability (e.g., disability pension), and other factors reflecting on the overall disease burden.
terms of the number of days or hours missed due to illness. Among the included studies, the definition of short-term absence varied and included self-reported absence from paid and/or unpaid (voluntary) work due to inflammatory bowel disease during the previous 3 or 12 months or sick leave greater than 14 days paid by a social insurance agency [10, 11•, 22].
Methods
Presenteeism Presenteeism refers to the reduced intensity of labor input due to health problems while working. In other autoimmune diseases, presenteeism has been shown to account for the largest component of total productivity losses. Presenteeism is typically measured using questionnaires such as the Work Productivity and Activity Impairment (WPAI) questionnaire [12]. Results are expressed as a percentage of impairment, with higher percentages indicating greater impairment and less productivity. The Crohn’s Disease Perceived Work Disability Questionnaire (CPWDQ) also measures subjective work capacity [13].
Literature Search and Synthesis A literature search was conducted in PubMed using combinations of the following search terms: Crohn’s disease, ulcerative colitis, inflammatory bowel disease, and sick leave, absenteeism, work loss, presenteeism, impairments, activity limitations, participation restrictions, disability, and disability pension. The search was restricted to the past 4.5 years (between January 2010 and April 2014) to capture recent findings. Following a review of abstracts, all articles containing information about the impact of inflammatory bowel disease on any type of disability or work-related outcomes were included. Studies focusing on health-related quality of life, fatigue, and depression were excluded in addition to review articles and research unrelated to inflammatory bowel disease, disability, or work. Quality of life studies were excluded because they rely on subjective feelings expressed by the patients, whereas the term disability refers to the objectively measureable impact of a disease on patient function [8]. Since the impact of inflammatory bowel disease on disability was the focus of this review, interventional studies were also excluded. Full-text articles were retrieved, and reference lists were screened to identify additional studies. The PRISMA Statement for Reporting Systematic Reviews and Meta-Analyses was used to conduct and report the results of this review [9]. Due to the great heterogeneity in study design, study populations, outcome measures, and statistical approach, pooling of effect estimates by use of metaanalysis was not attempted; therefore, only a narrative synthesis is provided.
Work Cessation/Long-Term Work Disability This is defined as work cessation through job loss, early retirement, or long-term absence due to being partially or fully disabled. In the included studies, long-term work disability was defined as reporting being partially or fully disabled [14, 15•], receiving part- and/ or fulltime pension [10], or having a social insurance agency recoded 25 % reduction in work capacity for at least 1 year [11•]. Unemployment The definition for this outcome can vary widely, and reporting can range from being unemployed to being unemployed but actively seeking work or being unemployed but able to work [6•]. The studies included in the review did not specify the definition of unemployment [16, 17]. Since it has become increasingly evident that disability encompasses a broader concept than work disability, we also included patient-reported outcomes (PROs), which measure problems that disabled patients experience in a variety of health domains (Table 1). Many of these PROs relied on the publication of the International Classification of Functioning, Disability and Health (ICF) [3]. We included the following PROs, which were identified in the literature search:
Outcomes Considered In the context of work disability, it is convention to equate work disability with work cessation; however, this results in a narrow view of the impact of disease on a patient’s work. More recently, a broader perspective also includes examining absenteeism and presenteeism. Absenteeism/Short-Term Absence Absenteeism, which usually precedes work cessation, refers to the number of missed workdays for employed individuals. It can be measured in
Generic Disability Questionnaires Used in Inflammatory Bowel Disease The World Health Organization Disability Assessment Scale (WHODAS) measures health and disability. It has been developed in correspondence with the activities and participation components of the ICF. The total score is generated as the weighted sum of all items with a higher score reflecting greater disability [2•, 4]. The Work and Social Adjustment Scale (WSAS) assesses work and social disability, where a cutoff point of 17 or more represents high levels of disability [2•, 18].
IBD inflammatory bowel disease, UC ulcerative colitis, CD Crohn’s disease
All diseases
WHO Disability Assessment Scale (WHODAS) [30]
Past 7 days
UC
All diseases
Past 7 days
CD
Work and Social Adjustment Scale (WSAS) [18]
Past year
CD
Disability scales not related to IBD specifically
Past month
IBD
Inflammatory Bowel Disease Disability Score (IBD-DS) [19] CD Perceived Work Disability Questionnaire (CPWDQ) [13] Work Productivity and Activity Impairment (WPAI) [12] Work Productivity and Activity Impairment (WPAI)
Past 30 days
Not specified
Last week
IBD
Inflammatory Bowel Disease Disability Index (IBD-DI) [8]
Recall period
Disease-specific disability/ work-related scales
Group
Questionnaire
Scales
To assess health and disability
To assess the impact of CD on the ability to work and/or to perform non-work activities To assess the impact of UC on the ability to work and/or to perform non-work activities To measure work and social adjustment
To measure perceived work disability
To evaluate aspects of IBD disability
To evaluate disability in IBD
Objective
Table 1 Overview of disability or work-related scales assessing outcomes in inflammatory bowel disease patients
12 or 36
5
6
6
16
49
19
Items
Absenteeism, presenteeism, work productivity impairment, activity impairment Absenteeism, presenteeism, work productivity impairment, activity impairment Work, home management, social leisure activities, private leisure activities, relationships Cognition, mobility, self-care, getting along, life activities, participation
Body functions, body structures, activities and participation, environmental factors Mobility, gastrointestinal-related problems, self-care, life activities, mental health, environmental factors Clinical determinants and social determinants of work impairment
Domains
Curr Gastroenterol Rep (2014) 16:414 Page 3 of 9, 414
414, Page 4 of 9
Inflammatory Bowel Disease-Specific Disability Questionnaires The Inflammatory Bowel Disease Disability Index (IBD-DI) [8] and Disability Score (IBD-DS) [19] have been developed to measure disability in patients with inflammatory bowel disease, Crohn’s disease, and ulcerative colitis. The IBD-DI is based on categories of the brief ICF core set for inflammatory bowel disease [8, 20]. It is currently being validated, and its final version is anticipated to be available in 2014 [21].
Results The search identified 167 titles (Fig. 1). During the title and abstract review process, a total of 140 articles were excluded: 126 articles were not specifically related to inflammatory bowel disease, ulcerative colitis, Crohn’s disease, or disability, and 14 articles were not written in English. The remaining 27 unique articles were subjected to the full review. The reference lists of these articles were reviewed, and one additional article was included for full-text review. Overall, 14 articles were excluded: 11 articles were reviews containing no original data, and 3 articles did not report data on the frequency of disability. The final review included 14 unique studies, which are described in Table 2. Effect of Inflammatory Bowel Disease on Work Disability A summary of the studies reporting on the frequency of shortand/or long-term disability in inflammatory bowel disease, Fig. 1 Flowchart of study selection and inclusion. Articles were only counted in one of the exclusion groups, even though articles could be excluded for more than one reason; IBD inflammatory bowel disease, UC ulcerative colitis, CD Crohn’s disease
Curr Gastroenterol Rep (2014) 16:414
ulcerative colitis, and/or Crohn’s disease patients is provided in Table 3. Absenteeism/Short-Term Absence A recent study from Sweden used a register-based cohort of 19,714 working-age patients with ulcerative colitis to find that 21 % of ulcerative colitis patients versus 13 % of the general population had greater than or equal to one sick leave episodes longer than 14 days [11•]. Ulcerative colitis patients missed a mean of 65 work days compared with 45 days in age-, sex-, education-, and county-matched individuals from the general population [11•]. Another recent study reported sick leave in 937 ulcerative colitis patients, who were recruited from seven university hospitals and seven general hospitals in the Netherlands [22]. Participants were asked to report the number of sick leave days from both paid and unpaid (voluntary) work within the previous 3 months because of inflammatory bowel disease [22]. Overall, 13 % of all currently employed ulcerative colitis patients reported a disease-related sick leave, with a mean loss of 2.5 work days during the previous 3 months [22]. The third study evaluated the impact of gastrointestinal symptoms on work and absenteeism in patients who were eligible for reimbursement of inflammatory bowel disease medication. After being randomly selected from the representative register of the Social Insurance Institution of Finland, the patients received a postal questionnaire [10]. The authors showed that 25 % of the 269 employed ulcerative colitis patients reported work absenteeism during the last 12 months [10]. In general, Crohn’s disease patients reported more frequent short-term absence from work than patients with
Curr Gastroenterol Rep (2014) 16:414 Table 2 Description of the 14 included studies
IBD inflammatory bowel disease, PRO patient-reported outcome, IBD-DS Inflammatory Bowel Disease Disability Score, IBD-DI Inflammatory Bowel Disease Disability Index, CPWDQ Crohn’s Disease Perceived Work Disability Questionnaire, WPAI Work Productivity and Activity Impairment, WSAS Work and Social Adjustment Scale, WHODAS WHO Disability Assessment Scale
Page 5 of 9, 414
Characteristics
Number of articles
Disease Crohn’s disease Ulcerative colitis Inflammatory bowel disease (IBD) Disability outcome
11 [2•, 10, 13, 15•, 16, 19, 22, 24, 25•, 27, 31] 10 [2•, 10, 11•, 15•, 16, 19, 22, 25•, 27, 32] 3 [10, 15•, 17]
Work-related Short-term absence Long-term disability IBD-specific PROs with disability focus IBD-DS/IBD-DI CPWDQ/WPAI General PROs with disability focus used in IBD WSAS/WHODAS Data source for disability outcomes Claims database/national register Survey/interview/questionnaire Region Australia Canada Europe (Greece, Spain, Switzerland, The Netherlands) Nordic countries (Finland, Sweden)
ulcerative colitis (18–31 % of Crohn’s disease patients versus 13–25 % of ulcerative colitis patients) [10, 22]. Presenteeism Using the disease-specific version of the WPAI in ulcerative colitis patients showed that these patients reported substantial impairment, especially in those with moderate/ severe disease [23]. In Crohn’s disease patients, the CPWDQ has been developed to measure perceived work capacity [13]. In the only study reported to date, this scale revealed higher scores in patients with more severe disease, that is, patients with active versus inactive disease (P150), but not ulcerative colitis (using the Ulcerative Colitis Activity Index (UCDAI) for disease activity) [19]. The IBD-DI [8] showed a good differentiation between Crohn’s disease, ulcerative colitis, and controls, and it inversely correlated with the CDAI for Crohn’s disease (P
INFLAMMATORY BOWEL DISEASE (S HANAUER, SECTION EDITOR)
Impact of Inflammatory Bowel Disease on Disability Katharina Büsch & Amnon Sonnenberg & Nick Bansback
Published online: 18 September 2014 # Springer Science+Business Media New York 2014
Abstract Inflammatory bowel disease can impact individuals at a young age, thus compromising their work productivity. Besides the inability to engage in gainful work, the concept of disability also relates to the patients’ diminished ability to undertake household and social activities. A literature search was performed of recent literature, and all articles containing information about the impact of inflammatory bowel disease on disability or any work-related outcomes were included. Recent studies suggest that 9 to 19 % of inflammatory bowel disease patients suffer from short-term absences from work and 19 to 22 % are on long-term disability. Crohn’s disease
patients reported being more affected by their disease than ulcerative colitis patients. A comparison of results from different studies is difficult due to the lack of consensus on how to define and measure disability. Additional research is needed to better quantify disability in inflammatory bowel disease patients.
This article is part of the Topical Collection on Inflammatory Bowel Disease
Introduction
K. Büsch (*) Clinical Epidemiology Unit, Department of Medicine, Karolinska Institutet, 171 76 Stockholm, Sweden e-mail: [email protected]
The term disability constitutes a complex, dynamic, and multidimensional concept that is used as an umbrella term for a variety of physical impairments, activity limitations, and restrictions in social participation [1••]. Information about disability is an important component in the assessment of health care because it reflects on a patient’s ability to undertake daily activities, such as paid employment and caring for children or relatives [1••, 2•, 3]. Along with traditional indicators of a population’s health status, disability has become crucial in measuring disease burden, evaluating the effectiveness of health interventions, and planning health policy [4]. Inflammatory bowel disease, which includes Crohn’s disease and ulcerative colitis, can affect individuals at a young age [5]. The disease can impact people’s ability to work [6•] and can therefore lead to high societal costs due to sick leave and disability pension [7]. The majority of studies related to disability in patients with inflammatory bowel disease have focused on work and employment [7]. Fewer studies have explored the impact of inflammatory bowel disease on broader aspects such as the chronic limitations that preclude the ability to engage in all daily activities such as social interactions [2•].
K. Büsch e-mail: [email protected] A. Sonnenberg Portland VA Medical Center, Portland, OR, USA e-mail: [email protected] A. Sonnenberg Oregon Health and Science University, Portland, OR, USA N. Bansback School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada e-mail: [email protected] N. Bansback Centre for Clinical Epidemiology and Evaluation, Vancouver Coastal Research Institute, Vancouver, BC, Canada N. Bansback Centre for Health Evaluation and Outcome Sciences, St. Paul’s Hospital, Vancouver, BC, Canada
Keywords Absenteeism . Crohn’s disease . Disability pension . Long-term disability . Presenteeism . Sick leave . Short-term disability . Ulcerative colitis . Work cessation
414, Page 2 of 9
Curr Gastroenterol Rep (2014) 16:414
The purpose of this review is to explore the recent published evidence regarding the impact of inflammatory bowel disease on disability among multiple domains, including short-term absence from work (e.g., sick leave), long-term disability (e.g., disability pension), and other factors reflecting on the overall disease burden.
terms of the number of days or hours missed due to illness. Among the included studies, the definition of short-term absence varied and included self-reported absence from paid and/or unpaid (voluntary) work due to inflammatory bowel disease during the previous 3 or 12 months or sick leave greater than 14 days paid by a social insurance agency [10, 11•, 22].
Methods
Presenteeism Presenteeism refers to the reduced intensity of labor input due to health problems while working. In other autoimmune diseases, presenteeism has been shown to account for the largest component of total productivity losses. Presenteeism is typically measured using questionnaires such as the Work Productivity and Activity Impairment (WPAI) questionnaire [12]. Results are expressed as a percentage of impairment, with higher percentages indicating greater impairment and less productivity. The Crohn’s Disease Perceived Work Disability Questionnaire (CPWDQ) also measures subjective work capacity [13].
Literature Search and Synthesis A literature search was conducted in PubMed using combinations of the following search terms: Crohn’s disease, ulcerative colitis, inflammatory bowel disease, and sick leave, absenteeism, work loss, presenteeism, impairments, activity limitations, participation restrictions, disability, and disability pension. The search was restricted to the past 4.5 years (between January 2010 and April 2014) to capture recent findings. Following a review of abstracts, all articles containing information about the impact of inflammatory bowel disease on any type of disability or work-related outcomes were included. Studies focusing on health-related quality of life, fatigue, and depression were excluded in addition to review articles and research unrelated to inflammatory bowel disease, disability, or work. Quality of life studies were excluded because they rely on subjective feelings expressed by the patients, whereas the term disability refers to the objectively measureable impact of a disease on patient function [8]. Since the impact of inflammatory bowel disease on disability was the focus of this review, interventional studies were also excluded. Full-text articles were retrieved, and reference lists were screened to identify additional studies. The PRISMA Statement for Reporting Systematic Reviews and Meta-Analyses was used to conduct and report the results of this review [9]. Due to the great heterogeneity in study design, study populations, outcome measures, and statistical approach, pooling of effect estimates by use of metaanalysis was not attempted; therefore, only a narrative synthesis is provided.
Work Cessation/Long-Term Work Disability This is defined as work cessation through job loss, early retirement, or long-term absence due to being partially or fully disabled. In the included studies, long-term work disability was defined as reporting being partially or fully disabled [14, 15•], receiving part- and/ or fulltime pension [10], or having a social insurance agency recoded 25 % reduction in work capacity for at least 1 year [11•]. Unemployment The definition for this outcome can vary widely, and reporting can range from being unemployed to being unemployed but actively seeking work or being unemployed but able to work [6•]. The studies included in the review did not specify the definition of unemployment [16, 17]. Since it has become increasingly evident that disability encompasses a broader concept than work disability, we also included patient-reported outcomes (PROs), which measure problems that disabled patients experience in a variety of health domains (Table 1). Many of these PROs relied on the publication of the International Classification of Functioning, Disability and Health (ICF) [3]. We included the following PROs, which were identified in the literature search:
Outcomes Considered In the context of work disability, it is convention to equate work disability with work cessation; however, this results in a narrow view of the impact of disease on a patient’s work. More recently, a broader perspective also includes examining absenteeism and presenteeism. Absenteeism/Short-Term Absence Absenteeism, which usually precedes work cessation, refers to the number of missed workdays for employed individuals. It can be measured in
Generic Disability Questionnaires Used in Inflammatory Bowel Disease The World Health Organization Disability Assessment Scale (WHODAS) measures health and disability. It has been developed in correspondence with the activities and participation components of the ICF. The total score is generated as the weighted sum of all items with a higher score reflecting greater disability [2•, 4]. The Work and Social Adjustment Scale (WSAS) assesses work and social disability, where a cutoff point of 17 or more represents high levels of disability [2•, 18].
IBD inflammatory bowel disease, UC ulcerative colitis, CD Crohn’s disease
All diseases
WHO Disability Assessment Scale (WHODAS) [30]
Past 7 days
UC
All diseases
Past 7 days
CD
Work and Social Adjustment Scale (WSAS) [18]
Past year
CD
Disability scales not related to IBD specifically
Past month
IBD
Inflammatory Bowel Disease Disability Score (IBD-DS) [19] CD Perceived Work Disability Questionnaire (CPWDQ) [13] Work Productivity and Activity Impairment (WPAI) [12] Work Productivity and Activity Impairment (WPAI)
Past 30 days
Not specified
Last week
IBD
Inflammatory Bowel Disease Disability Index (IBD-DI) [8]
Recall period
Disease-specific disability/ work-related scales
Group
Questionnaire
Scales
To assess health and disability
To assess the impact of CD on the ability to work and/or to perform non-work activities To assess the impact of UC on the ability to work and/or to perform non-work activities To measure work and social adjustment
To measure perceived work disability
To evaluate aspects of IBD disability
To evaluate disability in IBD
Objective
Table 1 Overview of disability or work-related scales assessing outcomes in inflammatory bowel disease patients
12 or 36
5
6
6
16
49
19
Items
Absenteeism, presenteeism, work productivity impairment, activity impairment Absenteeism, presenteeism, work productivity impairment, activity impairment Work, home management, social leisure activities, private leisure activities, relationships Cognition, mobility, self-care, getting along, life activities, participation
Body functions, body structures, activities and participation, environmental factors Mobility, gastrointestinal-related problems, self-care, life activities, mental health, environmental factors Clinical determinants and social determinants of work impairment
Domains
Curr Gastroenterol Rep (2014) 16:414 Page 3 of 9, 414
414, Page 4 of 9
Inflammatory Bowel Disease-Specific Disability Questionnaires The Inflammatory Bowel Disease Disability Index (IBD-DI) [8] and Disability Score (IBD-DS) [19] have been developed to measure disability in patients with inflammatory bowel disease, Crohn’s disease, and ulcerative colitis. The IBD-DI is based on categories of the brief ICF core set for inflammatory bowel disease [8, 20]. It is currently being validated, and its final version is anticipated to be available in 2014 [21].
Results The search identified 167 titles (Fig. 1). During the title and abstract review process, a total of 140 articles were excluded: 126 articles were not specifically related to inflammatory bowel disease, ulcerative colitis, Crohn’s disease, or disability, and 14 articles were not written in English. The remaining 27 unique articles were subjected to the full review. The reference lists of these articles were reviewed, and one additional article was included for full-text review. Overall, 14 articles were excluded: 11 articles were reviews containing no original data, and 3 articles did not report data on the frequency of disability. The final review included 14 unique studies, which are described in Table 2. Effect of Inflammatory Bowel Disease on Work Disability A summary of the studies reporting on the frequency of shortand/or long-term disability in inflammatory bowel disease, Fig. 1 Flowchart of study selection and inclusion. Articles were only counted in one of the exclusion groups, even though articles could be excluded for more than one reason; IBD inflammatory bowel disease, UC ulcerative colitis, CD Crohn’s disease
Curr Gastroenterol Rep (2014) 16:414
ulcerative colitis, and/or Crohn’s disease patients is provided in Table 3. Absenteeism/Short-Term Absence A recent study from Sweden used a register-based cohort of 19,714 working-age patients with ulcerative colitis to find that 21 % of ulcerative colitis patients versus 13 % of the general population had greater than or equal to one sick leave episodes longer than 14 days [11•]. Ulcerative colitis patients missed a mean of 65 work days compared with 45 days in age-, sex-, education-, and county-matched individuals from the general population [11•]. Another recent study reported sick leave in 937 ulcerative colitis patients, who were recruited from seven university hospitals and seven general hospitals in the Netherlands [22]. Participants were asked to report the number of sick leave days from both paid and unpaid (voluntary) work within the previous 3 months because of inflammatory bowel disease [22]. Overall, 13 % of all currently employed ulcerative colitis patients reported a disease-related sick leave, with a mean loss of 2.5 work days during the previous 3 months [22]. The third study evaluated the impact of gastrointestinal symptoms on work and absenteeism in patients who were eligible for reimbursement of inflammatory bowel disease medication. After being randomly selected from the representative register of the Social Insurance Institution of Finland, the patients received a postal questionnaire [10]. The authors showed that 25 % of the 269 employed ulcerative colitis patients reported work absenteeism during the last 12 months [10]. In general, Crohn’s disease patients reported more frequent short-term absence from work than patients with
Curr Gastroenterol Rep (2014) 16:414 Table 2 Description of the 14 included studies
IBD inflammatory bowel disease, PRO patient-reported outcome, IBD-DS Inflammatory Bowel Disease Disability Score, IBD-DI Inflammatory Bowel Disease Disability Index, CPWDQ Crohn’s Disease Perceived Work Disability Questionnaire, WPAI Work Productivity and Activity Impairment, WSAS Work and Social Adjustment Scale, WHODAS WHO Disability Assessment Scale
Page 5 of 9, 414
Characteristics
Number of articles
Disease Crohn’s disease Ulcerative colitis Inflammatory bowel disease (IBD) Disability outcome
11 [2•, 10, 13, 15•, 16, 19, 22, 24, 25•, 27, 31] 10 [2•, 10, 11•, 15•, 16, 19, 22, 25•, 27, 32] 3 [10, 15•, 17]
Work-related Short-term absence Long-term disability IBD-specific PROs with disability focus IBD-DS/IBD-DI CPWDQ/WPAI General PROs with disability focus used in IBD WSAS/WHODAS Data source for disability outcomes Claims database/national register Survey/interview/questionnaire Region Australia Canada Europe (Greece, Spain, Switzerland, The Netherlands) Nordic countries (Finland, Sweden)
ulcerative colitis (18–31 % of Crohn’s disease patients versus 13–25 % of ulcerative colitis patients) [10, 22]. Presenteeism Using the disease-specific version of the WPAI in ulcerative colitis patients showed that these patients reported substantial impairment, especially in those with moderate/ severe disease [23]. In Crohn’s disease patients, the CPWDQ has been developed to measure perceived work capacity [13]. In the only study reported to date, this scale revealed higher scores in patients with more severe disease, that is, patients with active versus inactive disease (P150), but not ulcerative colitis (using the Ulcerative Colitis Activity Index (UCDAI) for disease activity) [19]. The IBD-DI [8] showed a good differentiation between Crohn’s disease, ulcerative colitis, and controls, and it inversely correlated with the CDAI for Crohn’s disease (P
