Inflammatory Bowel Disease Disability Index Research Articles

The main determinants of disability in IBD and its relationship to optimism

inflammatory bowel disease (IBD) is a potentially disabling chronic disease that negatively affects many aspects of the patients' life. This study aimed to assess the IBD-associated disability in the outpatient setting and analyze how optimism and disability are related. a cross-sectional study was performed via the application of the Portuguese version of the IBD-Disability Index (PT-IBD-DI) and the Revised Life Orientation Test (PT-LOT-R) for the assessment of disability and optimism, respectively. a total of 143 patients were analyzed, the mean age was 38 ± 13 years, 50% were females and 51% had UC. The mean PT-IBD-DI score was 22 ± 17, which was classified as follows: 0-20: no disability; 20-35: mild disability; 35-50: moderate disability; and 50-100: severe disability. There were no significant differences between Crohn's disease (CD) and ulcerative colitis (UC) (p = 0.944). Female gender (p = 0.001), low level of education (p = 0.018), the number of days out of work (p = 0.020), rheumatologic manifestations (p = 0.005), the number of comorbidities (p = 0.002), the use psychotropic drugs (p = 0.043) and low PT-LOT-R scores (p < 0.001) were associated with higher IBD-DI scores according to the univariate analysis. According to the linear regression analysis, only female sex (p = 0.001), the number of comorbidities (p = 0.034) and low PT-LOT-R scores (p < 0.001) were associated with higher PT-IBD-DI scores. Optimism correlated inversely with PT-IBD-DI scores (ρ = -0.345, p < 0.001). IBD outpatients reported low levels of IBD-disability (mild disability: PT-IBD-DI score 20-35). Comorbidities and psychological factors (optimism) emerged as the main predictive factors of increased disability, reinforcing the importance of a multidisciplinary approach for these patients.

Validation of the inflammatory bowel disease disability index for self-report and development of an item-reduced version.

The Inflammatory Bowel Disease Disability Index (IBD-DI) is a measure of disability in inflammatory bowel disease (IBD). The IBD-DI is validated for use as a clinical interview but not for use as a self-report questionnaire. We aimed to validate the IBD-DI for self-report (IBD-DI-SR) and to reduce the number of items, using IBD patients from two centers. Between April and August 2017, ambulatory IBD patients were recruited from Christchurch Hospital, New Zealand and Concord Hospital, Australia. The IBD-DI clinical interview version was compared with a self-report version. Participants were randomized to do the clinical interview or self-report first. Validation of the IBD-DI-SR involved calculating the correlation coefficient between the clinician completed and self-reported version of the IBD-DI and Cronbach's α of internal consistency of the IBD-DI-SR. To create an item-reduced version, multiple linear regression was used. The R2 of the model described the overall association between the item-reduced IBD-DI-SR and the IBD-DI. One hundred fourteen patients (57 from Christchurch and 57 from Sydney) completed the IBD-DI-SR validation phase, of whom 63 had Crohn's disease and 51 had ulcerative colitis. The Pearson correlation coefficient between the IBD-DI-SR and IBD-DI is 0.90 (P<0.001), and Cronbach's α of the IBD-DI-SR was 0.86. The item-reduced version of the IBD-DI-SR consisted of eight questions instead of 28, explaining 77% of the variance. The IBD-DI-SR has demonstrated reliability and validity. The item-reduced IBD-DI-SR is a concise self-report instrument for measuring IBD disability, which makes the IBD-DI more widely usable.

Disease activity, steroid use and extraintestinal manifestation are associated with increased disability in patients with inflammatory bowel disease using the inflammatory bowel disease disability index: a cross-sectional multicentre cohort study.

The inflammatory bowel disease disability index (IBD-DI) was developed recently. The aim was to translate the IBD-DI into Danish and validate it for future clinical studies and practice, and to assess the level of disability among IBD patients. The IBD-DI was translated using a transcultural adaptation method. Between January and December 2017, patients from three outpatient clinics in three different regions in Denmark were given the final version of the IBD-DI for self-completion. Validation was carried out according to guidelines. Disability level was assessed among the entire cohort and in various subgroups. A total of 200 patients were included in the study, including 112 Crohn's disease (CD) and 88 ulcerative colitis (UC) patients. The response rate was 90%. The IBD-DI showed excellent reliability and validity. CD patients showed worse disability levels than UC patients [mean (SD): CD: 37.3 (20.2) vs. UC: 21.7 (16.4); P=0.04]. In both CD and UC, significantly increased disability levels were found between patients with active disease, use of steroid and extraintestinal manifestation (P<0.05). A valid and reliable version of the IBD-DI is now available in Danish for future studies. Several clinical factors are shown to affect the levels of disability among patients with CD and UC. The disability levels are significantly increased in patients with active disease, treated with systemic steroids, and extraintestinal manifestations are present in both CD and UC. Further testing of the Danish IBD-DI is needed to assess its responsiveness and interpretability.

Association Between IBD Disability and Reduced Work Productivity (Presenteeism): A Population-Based Study in Manitoba, Canada

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 (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. 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). 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.

Independent Validation of a Self-Report Version of the IBD Disability Index (IBDDI) in a Population-Based Cohort of IBD Patients.

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 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. 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). The findings support the validity of this new self-report version of the IBDDI as a sound measure of disability in IBD.

P187 Correlation between the Lemann Index and the Inflammatory Bowel Disease-Disability Index in Crohn’s disease

Crohn’s disease (CD) is a chronic progressive destructive disease resulting in cumulative structural bowel damage, which may predict long-term disability. The Lemann Index (LI) has been developed to measure CD-related bowel damage, including surgical resection and The presence of stricturing and penetrating lesions; it could range from 0 to 140. The Inflammatory Bowel Disease-Disability Index (IBD-DI) has recently been validated to assess disability in a patient with IBD; it could range from 0 to 100. The aim of the study was to measure bowel damage by using the LI and disability by using the IBD-DI in a cohort of CD patients and to evaluate the correlation between the two indices. We performed a prospective study in the tertiary referral centre in Lille, from September 2016 to November 2016, including all consecutive CD outpatients. Bowel damage was assessed by the LI calculated according to the published protocol and disability by the IBD-DI questionnaire. Factors associated with LI and IBD-DI levels were identified by a median comparison test or means of bivariate analyses of variance. The correlation between the two indices was determined by a Spearman correlation test. 130 CD patients were consecutively included. The mean of LI was 11.9 ± 14.1 and ranged from 0 to 72.5. The LI significantly increased with disease duration: median value of 0.9 (IQR, 0.3–2.2) for disease duration < 2 years, 1.6 (IQR, 0.3–10.8) for disease duration ≥2 and <10 years and 16.5 (IQR, 9.1–23.4) for disease duration ≥10 years. Anal location and exposition to anti TNF were associated with higher LI levels (p < 0.005). Among patients exposed to anti TNF, the LI was lower in patients who were exposed in the first two years of the disease (p = 0.015). The others factors associated with bowel damage were: previous intestinal resection, clinical and biological disease activity and exposition to immunosuppressants (p < 0.005). The mean of IBD-DI was 28.8 ± 6.3 and ranged from 0 to 71. The factors associated with disability were: female gender, anal location, extradigestive manifestations, clinical and biological disease activity and exposition to anti TNF (p < 0.005). No significant correlation was found between LI and IBD-DI (ρ = 0.12; CI 95% −0.05–0.29; p = 0.15). Only a correlation between the anus LI and the IBD-DI was observed: ρ = 0.20 (CI 95% 0.003 −0.36), (p = 0.02). Bowel damage but not disability increased with disease duration. Importantly, early introduction of anti TNF treatment prevented bowel damage progression. CD anal location was associated with high levels of LI and IBD-DI underlying the necessity to introduce early and intensive treatments in this CD population. No correlation was observed between the LI and the IBD-DI.

Systematic review and meta-analysis: assessment of factors affecting disability in inflammatory bowel disease and the reliability of the inflammatory bowel disease disability index.

The Inflammatory Bowel Disease Disability Index (IBD-DI) has recently been developed for patients with Crohn's disease (CD) and ulcerative colitis (UC). To assess the severity of disability and associated factors using the IBD-DI, and review the validity of the IBD-DI as a tool. Systematic review of cross-sectional studies. Patients included had UC or CD and were classified as active, in remission, or needing surgery, biological and/or steroid treatment. We included studies assessing disability using the IBD-DI and that were captured by electronic and manual searches (January 2017). The possibility of bias was evaluated with the Newcastle-Ottawa Scale. Nine studies were included with 3167 patients. Comparatively, patients with active disease had higher disability rates than those in remission (SMD [CI95]=1.49[1.11, 1.88], I2 =94%, P<.01), while patients on biological treatment had lower disability rates than those receiving corticosteroid treatment (SMD [CI95]=-0.22[-0.36, -0.08], I2 =0%, P<.01). Disease activity and unemployment were found to be associated factors. The IBD-DI scored "good" for internal consistency, "fair" to "excellent" for intra-rater reliability and "excellent" for inter-rater reliability. Construct validity was "moderately strong" to "very strong" and structural validity was found to be mainly unidimensional. The IBD-DI had excellent responsiveness, while its interpretability was only useful on a group level. This systematic review and meta-analysis found a significant association between disease activity, treatment received and disability; although significant heterogeneity was found. The IBD-DI is reliable and valid, but further studies are needed to measure its interpretability.

Symptoms of anxiety and depression are independently associated with inflammatory bowel disease-related disability

BackgroundInflammatory bowel disease (IBD) frequently results in disability. The relevance of psychological effects in causing disability, and whether disability occurs similarly in non-Western cohorts is as yet unknown. AimWe assessed the relationship between symptoms of anxiety and depression, quality of life and disability in a Singaporean IBD cohort and their predictors. MethodsCross-sectional study. We assessed consecutive IBD subjects’ IBD-Disability Index (IBD-DI), Hospital Anxiety and Depression Scale (HADS), and IBD questionnaire (IBDQ). Clinical and demographic variables were collected. Non-parametric statistical analyses were performed. Independent predictors of disability were identified through multivariate logistic regression. Results200 consecutive subjects were recruited (males: 69%; median age: 43.8 (±15.4) years; 95 had Crohn’s disease (CD), 105 had ulcerative colitis (UC); median IBD duration: 10.8 (±9.0) years.) 27% of the cohort had anxiety and/or depression, which worsened disability (IBD-DI: −9 (±14) with anxiety vs 6 (±13) without anxiety, P<0.001; −12 (±16) with depression vs 5 (±13) without depression, P<0.001). Age at diagnosis, use of prednisolone, stricturing CD and active IBD were significant predictors of disability. IBDQ strongly correlated with IBD-DI(rs=0.82, P<0.01). ConclusionSymptoms of anxiety and depression were common in this Asian cohort of IBD and were strongly associated with IBD-related disability. Recognizing psychological issues contributing to disability in IBD is important to ensure holistic care and appropriate treatment.

94 - Independent Validation of a Self-Report Version of the IBD Disability Index (IBDDI) in a Population-Based Cohort of IBD Patients

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.

P.05.10: The Inflammatory Bowel Disease Disability Index (IBD-DI) in Ulcerative Colitis: Relationship with Disease Characteristic and Quality of Life

P.05.10: The Inflammatory Bowel Disease Disability Index (IBD-DI) in Ulcerative Colitis: Relationship with Disease Characteristic and Quality of Life

Disability due to Inflammatory Bowel Disease Is Correlated with Drug Compliance, Disease Activity, and Quality of Life.

Background/AimsThe inflammatory bowel disease disability index (IBD-DI) was recently developed for IBD to assess the functional consequences and disease burden. We applied the IBD-DI to a Korean population and identified predictive factors influencing IBD-related disability.MethodsBetween March and August 2015, 322 consecutive patients with IBD were prospectively recruited. Patients completed the IBD-DI questionnaire and Crohn’s and Ulcerative Colitis Questionnaire (CUCQ-8) for assessing quality of life. We examined the relationships between IBD-DI and disease activity or quality of life and analyzed predictive factors in Korean IBD patients.ResultsEnrolled patients completed both questionnaires. Total IBD-DI was correlated with CUCQ-8 scores in both ulcerative colitis (r=0.636, p<0.001) and Crohn’s disease (r=0.711, p<0.001). Total IBD-DI was also correlated with disease activity in both ulcerative colitis (r= −0.224, p=0.003) and Crohn’s disease (r= −0.307, p<0.001). Better drug compliance was associated with lower disability (p=0.001) and higher quality of life (p=0.003).ConclusionsDisability from IBD was correlated with disease activity and poor quality of life. Better drug compliance was associated with lower disability and higher quality of life. Our findings indicate that physicians should emphasize the importance of medication compliance for IBD patients.

Development of the IBD Disk

The Inflammatory bowel disease (IBD) Disability Index is a validated tool that evaluates functional status; however, it is used mainly in the clinical trial setting. We describe the use of an iterative Delphi consensus process to develop the IBD Disk-a shortened, self-administered adaption of the validated IBD Disability Index-to give immediate visual representation of patient-reported IBD-related disability. In the preparatory phase, the IBD CONNECT group (30 health care professionals) ranked IBD Disability Index items in the perceived order of importance. The Steering Committee then selected 10 items from the IBD Disability Index to take forward for inclusion in the IBD Disk. In the consensus phase, the items were refined and agreed by the IBD Disk Working Group (14 gastroenterologists) using an online iterative Delphi consensus process. Members could also suggest new element(s) or recommend changes to included elements. The final items for the IBD Disk were agreed in February 2016. After 4 rounds of voting, the following 10 items were agreed for inclusion in the IBD Disk: abdominal pain, body image, education and work, emotions, energy, interpersonal interactions, joint pain, regulating defecation, sexual functions, and sleep. All elements, except sexual functions, were included in the validated IBD Disability Index. The IBD Disk has the potential to be a valuable tool for use at a clinical visit. It can facilitate assessment of inflammatory bowel disease-related disability relevant to both patients and physicians, discussion on specific disability-related issues, and tracking changes in disease burden over time.

P556 Female Crohn's disease patients and ulcerative colitis patients on biologic therapy are most disabled

Background: There is limited disability data in the biologic era using Patient Reported Outcomes. The aims of this study were to describe the disability status and identify determinants of disability in a well characterized cohort of IBD patients using the Inflammatory Bowel Disease Disability Index (IBD-DI). Methods: From June 2015 to September 2016, the IBD-DI was administered to adult IBD patients. Natural history data were available for each patient from time of diagnosis to time of completing the questionnaires. Clinical remission status at time of answering the questionnaire was also recorded. Results: 250 patients with IBD completed the IBD-DI. The median duration from diagnosis to completion of questionnaire was 45 months. The median age at diagnosis was 30 years. The median IBD-DI was 31.3 (IQR 17.9–41.1). The median IBD-DI score for CD was 32.14 (IQR 19.2–45.1) in CD and 28.71 (IQR 17.4–44.5) in UC. CD females were more disabled than males (IBD-DI score 36.6 vs 27.1, p=0.001). There was no significant gender bias in the UC group (female IBD-DI score 32.6 vs male 30.6, p=NS). Patients with active disease at the time of answering the questionnaires had a higher IBD-DI score compared with patients in remission (42.4 vs 29.0, p<0.001). Disease phenotype or disease location did not influence the IBD-DI score in CD or UC. Female CD patients in remission were also more disabled compared with male CD patients (33.9 vs 23.9, p=0.002). There was no difference in disability scores by gender in the UC group adjusted for clinical activity. UC patients on biologic therapy were more disabled than those who were not, despite being in clinical remission (IBD-DI score 36.7 vs 25.9, p=0.03). CD patients who had undergone intestinal resection demonstrated a trend towards reduced disability compared to those who had not (IBD-DI score 30.5 vs 35.3, p=0.059). CD patients with perianal disease were not more disabled than those without, (IBD-DI score 34.0 vs 32.0, p=0.3). 52 patients were severely disabled (IBD-DI score >50). 62% had CD, 71% were female, and 46% were in clinical remission at the time of answering the questionnaires. Of the CD patients, 70% had an inflammatory phenotype, 15% had perianal disease, and only 31% had prior intestinal resection. Only 10% of the UC patients with severe disability had undergone colectomy for refractory disease. Factors associated with high disability scores on multivariate analysis were female gender (p=0.01) and active disease (p=0.001) in CD, and need for biologic therapy (p=0.027) and active disease (p=0.005) in UC. Conclusions: Female CD patients are more disabled than males. The need for biologic therapy in UC is associated with higher disability. Severe disability is present in the absence of clinical activity.

P658 The Inflammatory Bowel Disease Disability Index (IBD-DI) in ulcerative colitis is related to disease activity, need of immunosuppressive therapy and quality of life

P658 The Inflammatory Bowel Disease Disability Index (IBD-DI) in ulcerative colitis is related to disease activity, need of immunosuppressive therapy and quality of life

The Inflammatory Bowel Disease-Disability Index: validation of the Portuguese version according to the COSMIN checklist.

Recently, the Inflammatory Bowel Disease-Disability Index (IBD-DI) was developed to assess disability in inflammatory bowel disease (IBD). Our aim was to validate the Portuguese version of IBD-DI according to the COnsensus-based Standards for the selection of the health Measurement INstruments (COSMIN) recommendations. After translation into Portuguese, the IBD-DI was administered by two interviewers to IBD patients at baseline and after 4 weeks and 4 months. We evaluated reliability (internal consistency, test-retest, and inter-rater reliability and measurement error), construct validity, responsiveness, and interpretability. At baseline, 129 patients (73=Crohn's disease; 56=ulcerative colitis) completed the IBD-DI. After 4 weeks and 4 months, 118 and 89 patients repeated the questionnaire, respectively. Factor analysis confirmed the unidimensionality of the scale and reduced the final version to 14 items. The Cronbach's α was 0.88. The intraclass correlation coefficients were 0.87 and 0.99 for test-retest (baseline and 4 weeks) and inter-rater reliability, respectively. The smallest detectable change was 18.64 at the individual level and 1.87 at the group level. IBD-DI scores correlated negatively with the total, physical, and mental scores of Short Form-36 items. The change score of IBD-DI between baseline and 4 months correlated negatively with the clinical evolution of patients. The minimal important change was 16.96. IBD-DI scores ranged from 0 to 78.6, with a mean of 21.8±18.1. Female sex, professional inactivity, and clinical disease activity were associated with higher IBD-DI scores. The Portuguese version of IBD-DI obtained is a reliable, valid, responsive, and interpretable (at the group level) tool to assess disability in Portuguese IBD patients.

Disability in Restorative Proctocolectomy Recipients Measured using the Inflammatory Bowel Disease Disability Index.

The inflammatory bowel disease [IBD] disability index [IBD-DI], which measures IBD-associated disability, has been validated on IBD patients but not those who have had restorative proctocolectomy with ileal pouch-anal anastomosis [RP with IPAA]. This study aimed to utilize the IBD-DI in RP with IPAA recipients and compare ulcerative colitis [UC]-indicated RP with IPAA patients to medically treated UC patients. This study was population based. Demographic, indication, complication and direct cost data were collected via medical records while disability, quality of life [QoL] and indirect costs were measured using questionnaires and structured interviews. De-identified raw data about medically treated UC patients were provided by a previous study for comparison. In total there were 136 RP with IPAA patients [mean 11.5 years of follow up]. Eighty-four completed the IBD-DI and 80 completed the IBD questionnaire [IBDQ]. The IBDQ and IBD-DI were highly correlated [r = 0.84, p < 0.01]. Worse QoL and disability were found in those who had their position affected at work [both p < 0.01] and those who had more than 100 days off work in the last year [p < 0.01 for QoL and p = 0.012 for disability]. Lower QoL and disability scores were associated with higher indirect and total costs [p < 0.01]. UC patients treated with RP with IPAA had less disability than medically treated UC patients [p = 0.04]. Disability in RP with IPAA recipients can be measured using the IBD-DI. Perioperative complications and high costs of care are associated with higher levels of disability. Disability of RP with IPAA recipients was lower than that of medically managed UC patients.

P438. The inflammatory bowel disease disability index applied to ileal pouch anal anastomoses in New Zealand

P438. The inflammatory bowel disease disability index applied to ileal pouch anal anastomoses in New Zealand

Validation of the Inflammatory Bowel Disease Disability Index in a population-based cohort

BackgroundIBDs are chronic destructive disorders that negatively affect the functional status of patients. Recently, the Inflammatory Bowel Disease Disability Index (IBD-DI) was developed according to standard WHO processes. The aims...

146 Validation of the Inflammatory Bowel Disease Disability Index in a Population-Based Cohort

146 Validation of the Inflammatory Bowel Disease Disability Index in a Population-Based Cohort

Self-reported disability in patients with inflammatory bowel disease largely determined by disease activity and illness perceptions.

The inflammatory bowel disease (IBD) disability index has recently been introduced to measure patients' physical, psychological, familial, and social limitations associated with IBD. We assessed factors related to self-reported disability and the relationship between disability and direct health care costs. A large cohort of patients with Crohn's disease (CD) and ulcerative colitis (UC) was prospectively followed for 2 years by 3 monthly web-based questionnaires. At 2 years, patients completed the IBD disability index, with lower score indicating more disability. Linear regression analysis was used to examine the impact of demographics, clinical characteristics, and illness perceptions on self-reported disability. Trends in direct health care costs across the disability severity groups minimal, mild, moderate, and severe, were tested. A total of 554 patients with CD and 424 patients with UC completed the IBD disability index (response rate, 45%). Both clinical characteristics and illness perceptions significantly contributed to self-reported disability (45%-47%, P = 0.000 and 8%-12%, P = 0.000, respectively). Patients with CD scored lower on the self-reported IBD disability index than patients with UC (0.255 versus 3.890, P < 0.000), indicating more disability in patients with CD. Factors independently associated with higher self-reported disability rates were increased disease activity, illness identity (higher number of symptoms attributed to IBD), and stronger emotional response. Disease duration and disease phenotype were not associated with self-reported disability. Direct health care costs increased with the worsening of self-reported disability (P = 0.000). More disability was reported by patients with CD than by UC. Self-reported disability in IBD was mainly determined by clinical disease activity and illness perceptions but not by disease duration or disease phenotype.