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This study aimed to explore the association between perceived isolation and symptoms of distress in people with GI disorders at the time of the pandemic; and to examine factors which moderate this relationship. This online cross-sectional survey was advertised in May–September 2020 via patient organisations and associated social media. Overall, 831 people (82% female, mean age 49 years) from 27 countries participated. A significant relationship between social isolation and psychological distress was noted (r = .525, p

The Inflammatory Bowel Disease Symptom Inventory (IBDSI) is a validated patient self-reported measure used to assess IBD disease activity. There have yet to be more granular analyses on which symptoms are most associated with active disease.To assess the prevalence of symptoms, and to examine which are most associated with disease activity as measured by a symptom index and objective measure of inflammation METHODS: The Manitoba Living with IBD Study is a prospective study of 156 participants with confirmed IBD who completed bi-weekly IBDSI. Relative risks (RR) and predictive values (NPV and PPV) were reported for each symptom to predict active disease defined as active IBDSI, self-reported flare and elevated faecal calprotectin (FCAL) (250 μg/g). Analyses were undertaken following stratification based on sex, and disease type (Crohn's disease [CD] and ulcerative colitis [UC]).In total, 69.2% were female; 64.7% had CD. Fatigue was the most prevalent symptom in both inactive and active disease, across all three disease measures (IBDSI: 24.5% and 75.1%, self-reported flare: 42.2% and 72.2%, FCAL: 46.0% and 60.6%). The absence of fatigue had a high NPV for active IBDSI and self-reporting a flare in both CD and UC. Urgency had a consistently strong NPV and RR across all three disease measures in both IBD subtypes and sexes. The number of loose/liquid bowel movements predicted elevated FCAL in UC (RR males = 3.5, 95% CI 1.2-9.9, RR females = 1.8, 95% CI 1.2-2.7), as did blood in stool in UC females (RR = 1.8, 95% CI 1.2-2.7). In males with CD, excessive bowel gas (RR = 2.0, 95% CI 1.2-3.4) and urgency (RR = 3.9, 95% CI 1.6-9.3) best predicted an elevated FCAL. No symptom was strongly predictive of an elevated FCAL in CD females.Urgency was consistently associated with disease activity, irrespective of the disease measure. Fatigue was the most prevalent symptom irrespective of disease activity measure. Individual symptoms have different impacts on subjective (IBDSI) and objective (FCAL) measures in IBD.

We estimated the incidence and prevalence of benzodiazepine and Z-drug (separately and jointly as BZD) use in the inflammatory bowel disease (IBD) population compared with matched controls without IBD and examined the association of mood/anxiety disorders (M/ADs) with the use of BZD from 1997 to 2017.Using administrative data from Manitoba, Canada, we identified 5,741 persons with incident IBD who were matched in a 1:5 ratio to controls on sex, birth year, and region. Validated case definitions were used to identify M/AD. Dispensations of BZD were identified. Multivariable generalized linear models were used to assess the association between IBD, M/AD, and BZD use.In 2016, the incident age/sex-standardized benzodiazepine use rates per 1,000 were 28.06 (95% confidence interval [CI] 26.41-29.81) in the IBD cohort and 16.83 (95% CI 16.28-17.39) in controls (adjusted rate ratio = 1.69 [95% CI 1.56-1.79]). Benzodiazepine incidence rates were higher for women with IBD than men, but the RR between cases and controls were similar for men and women. The incident age/sex-standardized Z-drug use rate per 1,000 was 21.07 (95% CI 19.69-22.41) in the IBD cohort. This was 1.87-fold higher than in controls (95% CI 1.73-2.01). In 2017, approximately 20% of persons with IBD used benzodiazepines and 20% used Z-drugs. There was a subadditive effect of both benzodiazepine and Z-drug uses between IBD and M/AD after adjusting for covariates.The use of BZD is more common in people with IBD than in population controls. Strategies to reduce the use of BZDs in persons with IBD and to offer alternative management strategies for M/ADs, sleep disorders, and other symptomatic concerns are needed.

BACKGROUND: A major deficit in understanding and improving treatment in coeliac disease (CD) is the lack of empiric data on real world gluten exposure. AIMS: To estimate gluten exposure on a gluten-free diet (GFD) using immunoassays for gluten immunogenic peptides (GIP). Relationships among GIP detection, symptoms and suspected gluten exposures were examined. METHODS: Adults with biopsy-confirmed CD on a GFD for 24 months were recruited from a population-based inception cohort. Participants kept a diary and collected urine samples for 10 days and stools on days 4–10. “Doggie bags” containing ¼ portions of foods consumed were saved during the first 7 days. Gluten in food, stool and urine was quantified using A1/G12 ELISA. RESULTS: Eighteen participants with CD (12 female; age 21–70 years) and 3 participants on a gluten-containing diet enrolled and completed the study. 12/18 CD participants had a median 2.1 mg gluten per exposure (range 0.2 to >80 mg). Most exposures were asymptomatic and unsuspected. There was high intraindividual variability in the interval between gluten ingestion and excretion. Participants were generally unable to identify the food. CONCLUSIONS: Gluten exposure on a GFD is common, intermittent, usually silent, and excretion kinetics are highly variable between individuals. The amount of gluten varied widely, but was typically in the milligram range which was 10–100 times less than was consumed by those on an unrestricted diet. These findings suggest that a strictly gluten free diet is difficult to attain and specific exposures are difficult to detect due to variable time course of excretion.

The aim of this cross-sectional study was to use an extended common sense model (CSM) to evaluate the impact of fear of COVID-19 on quality of life (QoL) in an international inflammatory bowel disease cohort. An online study involving 319 adults (75% female, mean (SD) 14.06 (15.57) years of symptoms) completed the Gastrointestinal Symptom Rating Scale, Brief Illness Perceptions Questionnaire, Fear of Contracting COVID-19 Scale, Brief-COPE, Depression, Anxiety and Stress Scale, and the EUROHIS-QOL. The extended CSM had an excellent fit (χ

Goal The aim of this study was to survey adults with celiac disease (CD) on the utility of specific aspects of follow-up and on information needs. Background Currently, the treatment for CD is strict gluten avoidance. Although this places the onus on the patient for disease management, patient perspectives on CD care have not been formally assessed. Study The Manitoba Celiac Disease Cohort prospectively enrolled adults newly diagnosed with CD using serology and histology. At the 24-month study visits, participants rated the utility of aspects of CD care on a 5-point scale anchored by "not at all useful" and "very useful" and the helpfulness of information on CD-related topics on a 6-point scale anchored by "not at all helpful" and "very helpful." Results The online survey was completed by 149 of 211 cohort members [median age 40 (interquartile range 30 to 56) y; 68% female]. Adherence to a gluten-free diet was good. Most participants (87%) responded that they should be seen regularly for medical follow-up of CD, preferably every 6 (26%) or 12 months (48%). Blood tests were the most highly rated care component (rated scored ≥4/5 by 78% of respondents), followed by the opportunity to ask about vitamins and supplements (50%), symptom review (47%), and information on CD research (44%). Diet review was not considered helpful. Conclusions Two years after diagnosis, most individuals with CD find regular specialist follow-up helpful, particularly for biochemical assessment of disease activity and its complications. Furthermore, information on research and long-term complications of CD is also valued.

Positive and negative psychological attributes have been shown to influence disease outcomes in many chronic health conditions. We aimed to evaluate the association between self-efficacy, optimism, health anxiety and intolerance of uncertainty and disease activity in inflammatory bowel disease (IBD).Adults with confirmed and recently active IBD enrolled in a prospective cohort study. Demographics, disease information, validated measures of psychological functioning related to general self-efficacy, optimism, health anxiety and intolerance of uncertainty were collected at baseline, week 26 and week 52. Clinical disease activity was assessed using the Inflammatory Bowel Disease Symptom Inventory (IBDSI), self-reported flares, and intestinal inflammation using fecal calprotectin (FCAL), collected at baseline, weeks 26 and 52. Generalized estimating equations were used to test the association between psychological functioning and disease activity.Participants' (n = 154) mean age was 43.4 years (SD 12.5), 69.5% were women and 64.1% had Crohn's disease. Adjusting for demographic variables, higher self-efficacy was associated with lower likelihood of flare by self-report (odds ratio [OR] 0.80, 95% confidence interval [CI] 0.71, 0.91) and IBDSI (OR 0.89, 95% CI 0.80, 0.99), while higher health anxiety was associated with greater likelihood of flare by self-report (OR 1.07, 95% CI 1.01, 1.18) and higher symptomatic disease activity (IBDSI; OR 1.14, 95% CI 1.05, 1.24). The psychological attributes were not significantly associated with active disease as measured by inflammation (FCAL).General self-efficacy and health anxiety are relevant in understanding patient experience with disease activity, and may be appropriate targets for psychological intervention in the care of individuals with IBD.

Objective We assessed the information needs of persons with any of three immune-mediated inflammatory diseases (multiple sclerosis [ MS], inflammatory bowel disease [IBD] and rheumatoid arthritis [RA]) regarding depression, as a first step toward developing patient-relevant information resources, ultimately to facilitate self-management and appropriate care. We also compared information needs across genders. Methods We surveyed participants with MS, IBD and RA regarding depression-related information needs including types of treatments, effectiveness, risks, benefits, and perceived helpfulness of treatments. We compared responses between groups using multivariate regression. Results 328 participants provided complete responses (MS: 141, IBD: 114, RA: 73). Most of the topics queried were perceived as very important, and similarly important for all groups. Women placed higher importance than men on most topics. The most popular formats for receiving information were discussion with a counselor (very preferred: 67.4%) and written information (very preferred: 65.5%); this did not differ between groups. Conclusions Persons affected by MS, IBD and RA are interested in receiving information about multiple topics related to depression treatment, from multiple sources. Women desire more information than men. Practice implications These findings can be used to design information resources to meet information needs regarding depression in MS, IBD and RA.

Objectives Existing measures of inflammatory bowel disease (IBD) symptoms are not well suited to self-report, inadequate in measurement properties, insufficiently specific, or burdensome for brief or repeated administration. We aimed to develop a patient-reported outcome measure to assess a broader range of IBD symptoms. Methods The IBD Symptoms Inventory (IBDSI) was developed by adapting symptom items from existing clinician-rated or diary-format inventories; after factor analysis, 38 items were retained on 5 subscales: bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications. Participants completed the IBDSI and other self-report measures during a clinic visit. A nurse administered the Harvey Bradshaw Index (HBI) for Crohn’s disease (CD) or the Powell-Tuck Index (PTI) for ulcerative colitis (UC), and a gastroenterologist completed a global assessment of disease severity (PGA). Results The 267 participants with CD (n = 142) or UC (n = 125), ages 18 to 81 (M = 43.4, SD = 14.6) were 58.1% female, with a mean disease duration of 13.9 (SD = 10.5) years. Confirmatory factor analysis supported the 5 subscales. The total scale and subscales showed good reliability and significant correlations with self-report symptom and IBD quality of life measures, the HBI, PTI, and PGA. Conclusions The IBDSI showed strong measurement properties: a supported factor structure, very good internal consistency, convergent validity, and excellent sensitivity and specificity to clinician-rated active disease. Self-report HBI and PTI items, when extracted from this measure, produced scores comparable to clinician-administered versions. The 38-item IBDSI, or 26-item short form, can be used as a brief survey of common IBD symptoms in clinic or research settings.

Objective To determine whether comorbid diabetes and hypertension are associated with cognition in multiple sclerosis (MS) after accounting for psychiatric comorbidities. Methods Participants completed a structured psychiatric interview, the Hospital Anxiety and Depression Scale (HADS), a comorbidity questionnaire, and cognitive testing including the Symbol Digit Modalities Test (SDMT), California Verbal Learning Test (CVLT-II), Brief Visuospatial Memory Test-Revised (BVMT-R), and verbal fluency. Test scores were converted to age-, sex- and education-adjusted z-scores. We evaluated associations between diabetes and hypertension and the four cognitive z-scores using a multivariate linear model, adjusting for comorbid depression and anxiety disorders, psychotropic medications, disease-modifying therapies, smoking status and body mass index. Results Of 111 participants, most were women (82.9%) with relapsing remitting MS (83.5%), of mean (SD) age 49.6 (12.7) years. Comorbidity was common; 22.7% participants had hypertension, 10.8% had diabetes, 9.9% had current major depression, and 9.9% had current anxiety disorders. Mean (SD) z-scores were: SDMT −0.66 (1.15), CVLT-II −0.43 (1.32), BVMT-R −0.49 (1.07) and fluency −0.59 (0.86). Diabetes (p = 0.02) and anxiety disorder (p = 0.02) were associated with cognitive function overall. Diabetes was associated with lower BVMT-R (β = −1.18, p = 0.0015) and fluency (β = −0.63, p = 0.037) z-scores. Anxiety was associated with lower SDMT (β = -1.07, p = 0.0074) z-scores. Elevated anxiety symptoms (HADS-A ≥ 11) were associated with lower z-scores on the SDMT and CVLT-II. Conclusion Comorbidities, including diabetes and anxiety, are associated with cognitive dysfunction in MS. Their presence may contribute to the heterogeneous pattern of impairments seen across individuals and they may represent targets for improved management of cognitive symptoms.

Background The mental health response to the coronavirus (COVID‐19) pandemic–related product shortages in those living with chronic gastrointestinal (GI) disorders has received little attention. We aimed to explore the association between the pandemic‐related product shortages and psychological distress in people with GI disorders. Methods This online cross‐sectional survey was nested within an ongoing, international, prospective study of well‐being in people with GI disorders. The study was advertised in multiple countries in May‐September 2020 via patient organizations and social media. The primary outcome measure was distress, evaluated by the Depression Anxiety Stress Scale. We utilized linear regressions, adjusting for covariates and testing individual moderation effects. Key Results Overall, 831 people completed the survey from 27 countries, of whom 82% were female (mean age = 49 years). The most common disorders included inflammatory bowel disease (n = 322), celiac disease (n = 273), and irritable bowel syndrome (n = 260). Significant problems accessing food were reported by 19.8%, non‐medical therapies by 16%, toilet paper by 10.8%, and essential medication by 8.9% of the sample (>5% pain medication). There was a positive association between toilet paper and pain medication shortages and distress, and a negative association between food shortages and distress. Significant moderation effects were identified for COVID‐19 prevalence and toilet paper and food shortages, and between COVID‐19 fear and pain medication shortages. Conclusions and Inferences The study documented a significant relationship between product shortages and psychological distress, which were associated with COVID‐19 prevalence and fear. Strategies addressing COVID‐19 fear could potentially modify the relationship between shortages and distress., Product shortages were associated with psychological distress in people with gastrointestinal disorders at the time of the COVID‐19 pandemic. The relationship between product shortages and distress was moderated by COVID‐19 prevalence and fear.

BACKGROUND & AIMS: Patients with celiac disease (CD) often report inadvertent gluten exposures and challenges reading labels. The most common cause of non-responsive CD is gluten exposure. We aimed to assess whether recently diagnosed CD patients can determine whether a food is gluten-free based on labeling, and to assess skills over time. A secondary aim was to identify factors associated with label reading proficiency. METHODS: Inception cohort with follow-up at 6, 12, and 24 months after diagnosis. Participants were asked to determine whether 25 food items were gluten-free based on labeling information. Diet adherence was assessed using the Celiac Diet Assessment Tool (CDAT) and the Gluten-Free Eating Assessment Tool (GF-EAT). 144 adults with newly diagnosed celiac disease were enrolled. The initial quiz at 6 months was completed by 83%. Quizzes were completed by 72% at 12 months and 70% at 24 months. RESULTS: Median overall accuracy scores were: 23/25, 24/25 and 21/25 at 6, 12 and 24 months respectively. Gluten-free products with explicit “gluten-free” claims had the fewest errors. Quiz scores were not correlated with tTG IgA levels, or CDAT or GF-EAT scores. Diet adherence was generally good (>85% with CDAT

Introduction We aimed to validate the Medication Adherence Report Scale-5 (MARS-5) as a tool for assessing medication adherence in inflammatory bowel disease (IBD) and to determine predictors of medication adherence. Methods One hundred twelve (N = 112) adults with confirmed IBD participating in the longitudinal Manitoba Living With IBD Study were eligible. Demographics, IBD type, surgeries, disease activity (using the Inflammatory Bowel Disease Symptom Inventory and fecal calprotectin levels), perceived stress, and medication use were collected biweekly through online surveys. The MARS-5 scores were obtained at baseline and at 1 year. Correlation between medication monitoring data and MARS-5 scores was performed and the optimal MARS-5 cutoff point for adherence assessment determined. Predictors of medication adherence were assessed at both ≥90% and ≥80%. Results Participants were predominantly female (71.4%), mean age was 42.9 (SD = 12.8), and the majority (67.9%) had Crohn disease (CD). Almost half (46.4%) were taking more than 1 IBD medication, with thiopurines (41.9%) and biologics (36.6%) the most common. Only 17.9% (n = 20) were nonadherent at a 22 and >23, respectively. Having CD (OR = 4.62; 95% confidence interval, 1.36-15.7) was the only significant predictor of adherence. Conclusion MARS-5 is a useful measure to evaluate adherence in an IBD population. In this highly adherent sample, disease type (CD) was the only predictor of medication adherence.

Background Substance use disorders (SUDs) impose a substantial individual and societal burden; however, the prevalence and associated factors in persons with inflammatory bowel disease (IBD) are largely unknown. We evaluated the prevalence and risk factors of SUD in an IBD cohort. Methods Inflammatory bowel disease participants (n = 247) were recruited via hospital- and community-based gastroenterology clinics, a population-based IBD research registry, and primary care providers as part of a larger cohort study of psychiatric comorbidity in immune-mediated inflammatory diseases. The Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders IV was administered to participants to identify lifetime SUD, anxiety disorder, and major depressive disorder. Additional questionnaires regarding participants’ sociodemographic and clinical characteristics were also completed. We examined demographic and clinical factors associated with lifetime SUD using unadjusted and adjusted logistic regression modeling. Results Forty-one (16.6%) IBD participants met the criteria for a lifetime diagnosis of an SUD. Factors associated with elevated odds of SUD were ever smoking (adjusted odds ratio [aOR], 2.96; 95% confidence interval [CI], 1.17–7.50), male sex (aOR, 2.44; 95% CI, 1.11–5.36), lifetime anxiety disorder (aOR, 2.41; 95% CI, 1.08–5.37), and higher pain impact (aOR, 1.08; 95% CI, 1.01–1.16). Conclusions One in six persons with IBD experienced an SUD, suggesting that clinicians should maintain high index of suspicion regarding possible SUD, and inquiries about substance use should be a part of care for IBD patients, particularly for men, smokers, and patients with anxiety disorders and pain., Authors evaluated the prevalence and risk factors of SUD in an IBD cohort (n = 247). Forty-one (16.6%) participants experienced a lifetime SUD. Factors associated with elevated odds of SUD were ever smoking, male sex, lifetime anxiety disorder, and higher pain impact.

Background Suicide is a leading cause of death worldwide. Transition from suicidal ideation (SI) to suicide attempt is high within a year of SI onset. The risk of suicide and SI is elevated in persons with inflammatory bowel disease (IBD) versus the general population. We aimed to validate the Patient Heath Questionnaire (PHQ)-9 as a screening tool for SI in IBD and to determine factors associated with SI in IBD. Methods IBD participants (n = 247) recruited from the community and clinics completed the PHQ-9 and participated in the Structured Clinical Interview for DSM-IV (SCID). We determined the sensitivity, specificity, and positive and negative predictive value (PPV and NPV) of the PHQ-9 in identifying SI as compared to the SCID. Using logistic regression we examined the association of SI with demographic and clinical factors. Results SI was endorsed by 24 (9.7%) participants on the PHQ-9 and 5 (2.0%) based on the SCID. The PHQ-9 had good sensitivity (100%), specificity (92.2%), and NPV (100%) but low PPV (20.8%) for SI. On univariate analysis, factors strongly associated with SI were depression (OR 13.1; 95%CI: 4.46, 40.5), anxiety (OR 11.3; 95%CI: 4.46, 28.6), and active disease (OR 3.87; 95%CI: 1.54, 9.71). On multivariable analysis, depression (OR 5.54; 95%CI: 1.67, 18.4) and pain (OR 1.14; 95%CI: 1.03, 1.25) were associated with SI. Conclusions Overall the PHQ-9 is a valid screening tool for SI in IBD patients, and routine implementation of this tool would support screening for depression and SI effectively and efficiently in clinical practice.

Celiac disease and functional intestinal disorders may overlap, yet the natural history of functional symptoms in patients with celiac disease is unknown. To investigate the prevalence of irritable bowel syndrome (IBS), functional dyspepsia (FD), and functional bloating (FB) symptoms among patients with celiac disease at diagnosis and during the first year of a gluten-free diet. Adults with a new diagnosis of celiac disease were surveyed at baseline, 6 months and 1 year using standardized measures for intestinal symptoms [Rome III diagnostic questionnaire and celiac symptom index (CSI)] and gluten-free diet adherence [gluten-free eating assessment tool (GF-EAT) and celiac diet adherence test]. At diagnosis, two-thirds fulfilled Rome III diagnostic questionnaire symptom criteria for IBS (52%), functional dyspepsia (27%), and/or functional bloating (9%). One year post-diagnosis, there was high adherence to a gluten-free diet as 93% reported gluten exposure less than once per month on the GF-EAT and only 8% had ongoing celiac disease symptoms (CSI score >45). The rates of those meeting IBS (22%) and functional dyspepsia (8%) symptom criteria both decreased significantly on a gluten-free diet. The prevalence of functional symptoms (any of IBS, FD or FB) at 1 year was 47%. Long-term follow-up of patients with celiac disease is necessary because many patients with celiac disease who are adherent to a gluten-free diet have persistent gastrointestinal symptoms.

Background Our aim was to explore the relationships among perceived stress, intestinal inflammation, and inflammatory bowel disease (IBD) symptoms over time. Methods Participants were recruited from a population-based registry of persons with IBD and assessed at months 0, 3, and 6. Key dependent measures were the Manitoba IBD Index (symptom activity), Cohen's Perceived Stress Scale, and fecal calprotectin in stool (intestinal inflammation). Results Complete data were available for 417 participants at months 0; 369 provided follow-up data. Active symptoms were reported by 54% of those with Crohn's disease (CD) and 40% of those with ulcerative colitis (UC) and approximately one-third consistently had fecal calprotectin measures ≥250 μg/g, suggestive of active inflammation. A significant proportion of participants had indications of inflammation but no active symptoms over the 6 months. Correlations of month 0 perceived stress and disease activity measures with values at months 3 and 6 for both CD and UC indicated strong temporal stability. In hierarchical multiple regression analyses, month 0 symptom activity was thus a strong predictor of later symptom activity for CD and UC. Perceived stress predicted change in symptom activity from 0 to 3 months for CD, as did use of prednisone for UC. Comparably, month 0 perceived stress was a strong predictor of later perceived stress for CD and UC, while month 0 symptom activity predicted change in perceived stress from 0 to 3 months for both CD and UC. Conclusions The analysis revealed prospective bidirectional relationships between perceived stress and IBD symptoms but no relationship between perceived stress and change in intestinal inflammation as assessed by fecal calprotectin.

Objective To test the validity and reliability of screening instruments for depression and anxiety in rheumatoid arthritis (RA). Methods Participants with RA completed the Patient Health Questionnaire (PHQ-2 or PHQ-9), the Patient Reported Outcomes Measurement Information System depression short form 8a and anxiety short form 8a, the Hospital Anxiety and Depression Scale anxiety score (HADS-A) and depression score (HADS-D), the Overall Anxiety Severity and Impairment Scale, the Generalized Anxiety Disorder 2- and 7-item scales, and the Kessler-6 scale. Clinical depression and anxiety disorders were confirmed using the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Axis I Disorders (SCID-1) research version. We reported sensitivity, specificity, positive predictive value, and negative predictive value using SCID-1 diagnoses as the criterion standard. Test-retest reliability was assessed with the intraclass correlation coefficient. Results Of 150 participants, 11.3% had SCID-1-diagnosed depression, 7.3% had SCID-1-diagnosed generalized anxiety disorder, and 19.3% had any SCID-1-diagnosed anxiety disorder. For depression, sensitivity ranged from HADS-D (cut point 11; 35%) to PHQ-2 (88%) and PHQ-9 (87%). Specificity ranged from PHQ-9 (77%) and PHQ-2 (84%) to HADS-D (cut point 11; 94%). Positive predictive value ranged from 30% to 43%. Negative predictive value ranged from 92% to 98%. For generalized anxiety disorder, sensitivity ranged from HADS-A (cut point 11; 45%) to HADS-A (cut point 8; 91%). Specificity ranged from 81% to 89% for all measures except the HADS-A (cut point 8; 63%). Intraclass correlation coefficient estimates ranging from 0.69 to 0.88 confirmed good test-retest reliability. Conclusion Depression screening instruments had good diagnostic performance; anxiety instruments were more variable. Identified depression and anxiety require clinical confirmation.

Background Inflammatory bowel disease (IBD) is associated with a high prevalence of comorbid depressive and anxiety disorders. A significant proportion of IBD patients with comorbid psychiatric disorders remain undiagnosed and untreated, but factors associated with diagnosis are unknown. We evaluated the prevalence of undiagnosed depression and anxiety in an IBD cohort, along with the associated demographic and clinical characteristics. Methods We obtained data from the enrollment visit of a cohort study of psychiatric comorbidity in immune-mediated diseases including IBD. Each participant underwent a Structured Clinical Interview for DSM-IV-TR Axis I Disorders (SCID) to identify participants who met lifetime criteria for a diagnosis of depression or anxiety. Those with a SCID-based diagnosis were classified as diagnosed or undiagnosed based on participant report of a physician diagnosis. Results Of 242 eligible participants, 97 (40.1%) met SCID criteria for depression, and 74 (30.6%) met criteria for anxiety. One-third of participants with depression and two-thirds with anxiety were undiagnosed. Males were more likely to have an undiagnosed depressive disorder (odds ratio [OR], 3.36; 95% confidence interval [CI], 1.28–8.85). Nonwhite participants were less likely to have an undiagnosed anxiety disorder (OR, 0.17; 95% CI, 0.042–0.72). Conclusion Our findings highlight the importance of screening for depression and anxiety in patients with IBD, with particular attention to those of male sex and with a lower education level.

BACKGROUND Self-efficacy describes a person's confidence in their ability to manage demands, and is predictive of health outcomes in chronic disease such as hospitalization and health status. However, meaningful measurement must be domain (e.g., disease) specific. This study aims to provide validation of the Inflammatory Bowel Disease Self-Efficacy scale (IBD-SE), using a population-based IBD sample. METHODS Manitoba IBD Cohort Study participants completed a survey and clinical interview at a mean of 12 years postdiagnosis (n = 121 Crohn's disease; n = 108 ulcerative colitis), which included validated measures of psychological functioning, disability, disease-specific quality of life, perceived health, and current and recent disease activity, in addition to the IBD-SE. RESULTS The IBD-SE had high internal consistency (Cronbach's α = 0.97), and a 4-factor structure was confirmed. Construct validity was demonstrated as follows: the IBD-SE was strongly correlated with mastery (r = 0.53), highly correlated in the expected directions with measures of psychological well-being (r = 0.70), stress (r = -0.78), distress (r = -0.71), disability (r = -0.48), disease-specific quality of life (r = 0.68), and overall perceived health (r = 0.52) (all P < 0.001). Those with currently inactive disease had higher self-efficacy than the active disease group (Crohn's disease: mean = 232 versus 195, P < 0.001; ulcerative colitis: mean = 233 versus 202, P < 0.01), with similar findings for recent symptomatic disease activity. CONCLUSIONS The IBD-SE is a reliable, valid, and sensitive measure as demonstrated in this population-based sample, supporting its utility in IBD. Because self-efficacy is a modifiable psychological characteristic that can contribute to positive health outcomes, the IBD-SE may prove to be a valuable instrument for research and in targeted intervention with IBD patients.

SummaryBackground A gluten-free diet is the only recommended treatment for coeliac disease. Aim To determine the prevalence and characteristics of reactions to gluten among persons with coeliac disease on a gluten-free diet. Methods Adults with biopsy proven, newly diagnosed coeliac disease were prospectively enrolled. A survey related to diet adherence and reactions to gluten was completed at study entry and 6 months. The Coeliac Symptom Index, Coeliac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (GF-EAT) were used to measure coeliac disease symptoms and gluten-free diet adherence. Results Of the 105 participants, 91% reported gluten exposure

Background People with inflammatory bowel disease (IBD) are at increased risk for unemployment and work absenteeism over the course of their adult lives. However, little is known about the firsthand experiences of people living with the disease regarding perceived barriers, facilitators, and strategies for navigating work roles. Methods In this qualitative study, participants were purposefully recruited from 2 existing IBD cohort study samples. Recruitment strategies aimed for diversity in age, sex, and disease type, duration, and symptom activity. In-depth interviews sought perspectives of living with IBD. Data were analyzed using inductive qualitative methods. Results Forty-five people currently or previously in the workforce participated; 51% were female. The mean age was 45.4 years (SD = 16.1; range = 21-73 years). Mean IBD duration was 10.9 years (SD = 6.3). Participants had a broad range of experiences in adapting to work roles. IBD symptoms and treatments interacted with other personal and environmental factors to shape the experiences of work. Experiences were shaped by: (1) personal health and well-being, (2) personal values, beliefs, and knowledge, (3) job characteristics, (4) workplace physical environment, (5) workplace culture, and (6) financial factors. Participants identified personal strategies and environmental supports that assisted them to navigate their work roles. Conclusions The perspectives of people with IBD provided in-depth understanding of contextual factors that influence work roles. They identified personal strategies to manage health and choices about work, environmental supports that promote timely workplace accommodations, and appropriate social insurance benefits as facilitators of work retention for people with IBD.

Objective. To describe the sources of stress for persons with IBD and changes with changes in symptoms.Methods. 487 participants were recruited from a population-based IBD registry. Stress was measured at study entry and three months later, using a general stress measure and the Sources of Stress Scale. Four symptom pattern groups were identified: persistently inactive, persistently active, inactive to active, and active to inactive.Results. General stress levels were stable within each symptom pattern group over the three-month period, even for those with changing symptom activity. The persistently active group had higher general stress at month 0 and month 3 than the persistently inactive group and higher mean ratings of most sources of stress. IBD was rated as a highly frequent source of stress by 20–30% of the persistently active group compared to 1-2% of the inactive group. Finances, work, and family were rated as high frequency stresses in the persistently active group at a similar level to IBD stress. In the groups with fluctuating symptoms, there was little change in stress ratings with changes in symptom activity.Conclusion. Stress was experienced across several domains in addition to stress related to IBD. Persons with active symptoms may benefit from targeted stress interventions.

BACKGROUND Restorative proctocolectomy with ileal pouch-anal anastomosis is the surgical treatment of choice for patients with medically refractory ulcerative colitis. Postsurgery, functional and inflammatory complications of the ileal pouch often occur. Our previous study demonstrated that irritable pouch syndrome (IPS) is associated with the use of antidepressants or anxiolytics, suggesting an influence of psychological factors on patients' symptoms. The aim of this study was to identify the specific psychological factors and coping strategies in patients with functional (IPS) and inflammatory (pouchitis, cuffitis, Crohn's disease of the pouch) pouch disorders. METHODS Consecutive patients with functional pouch disorders (IPS), inflammatory pouch conditions, and asymptomatic ileal pouch-anal anastomosis patients were surveyed using validated measures of quality of life (the Cleveland Global Quality of Life [CGQL] and Irritable Bowel Syndrome-Quality of Life [IBS-QOL]), daily functional impairment (WSAS), coping mechanisms (brief COPE) and anxiety/depression (DASS-21). RESULTS Of 243 patients surveyed, 157 (64.6%) completed the surveys, of whom 137 (56.4%) met inclusion criteria and were included in the analysis. Sixty-one percent of respondents had pouch inflammation (pouchitis, N = 35; cuffitis, N = 14; and Crohn's disease of the pouch, N = 35), 20% had IPS (N = 27) and 19% (N = 26) had asymptomatic normal pouches. The age of participants ranged from 20 to 79 years with the mean ages of patients with normal pouches, IPS and inflammatory pouch conditions being 51.7 ± 12.5, 47.1 ± 15.0, 47.2 ± 15.1 years, respectively. Patients with IPS were more likely to be taking antidepressants, anxiolytics, or narcotics than the other groups (P < 0.04). Patients with IPS or inflammatory pouches had significantly poorer quality of life (CGQL, P < 0.001; IBS-QOL, P < 0.003) than those with asymptomatic pouches, with differences particularly in the areas of food avoidance, activity interference, and sexual difficulties. Those with IPS (median = 11; interquartile range [IQR]: 3-19) or inflammatory pouch conditions (median = 7; IQR: 3-18) had a greater impairment in the domains of daily functioning related to the pouch condition than those with normal pouches (median = 1.5; IQR: 0-6; P = 0.003). The mean depression symptom scores were significantly higher in the IPS group than in the normal pouch group (11.7 ± 9.7 versus 4.4 ± 6.2; P = 0.012). CONCLUSIONS IPS patients were more likely to have depressive symptoms and had a greater amount of impairment in daily functioning related to their pouch condition. Additionally, patients with functional pouch disorders are more likely to be concurrently treated with antidepressants, anxiolytic or narcotic agents than those with inflammatory pouches or normal pouches.

Objective Immune-mediated inflammatory diseases (IMID) such as multiple sclerosis (MS), inflammatory bowel disease (IBD) and rheumatoid arthritis (RA) are associated with a high prevalence of psychiatric comorbidity but little is known about the prevalence of social phobia in IMID, or the factors associated with social phobia. We aimed to determine the prevalence of social phobia in MS, IBD and RA, and the factors associated with social phobia in these IMID. Methods We obtained data from the enrollment visit of a cohort study in IMID of whom 654 participants were eligible for this analysis (MS: 254, IBD: 247, RA: 153). Each participant underwent a semi-structured psychiatric interview which identified depression and anxiety disorders including social phobia (lifetime and current), an assessment of disease activity, and reported sociodemographic information. Results Overall, 12.8% of participants had a lifetime diagnosis of social phobia (MS: 10.2%, IBD: 13.0%, RA: 17.0%). Social phobia was associated with younger age (OR 0.98; 0.97–1.00), having a high school education or less (OR 1.78; 1.08–2.91), comorbid major depressive disorder (OR 2.79; 1.63–4.78) and comorbid generalized anxiety disorder (OR 2.56; 1.30–5.05). Persons with RA had increased odds of having social phobia as compared to persons with MS (OR 2.26; 1.14–4.48) but not IBD. Conclusion Persons with IMIDs have a relatively high lifetime prevalence of social phobia, exceeding that reported for the Canadian general population. Strategies aimed at early detection, and effective clinical management of social phobia in IMID are warranted.

Background Within the multiple sclerosis (MS) population, depression and anxiety are highly prevalent comorbidities that are associated with adverse outcomes such as diminished quality of life and disability progression. In the general population, many people who do not meet formal diagnostic criteria for depression or anxiety disorders still identify a need for mental health care. Limited data are available regarding the perceived need for mental health care among persons with MS. Objective We aimed to determine factors associated with a perceived need for mental health care in the MS population. Methods Participants with MS completed the Hospital Anxiety and Depression Scale (HADS) to assess severity of depression and anxiety symptoms, and reported whether they perceived a need for mental health care, in the context of a larger study examining the burden of psychiatric disorders in immune-mediated inflammatory disease. Participants were also evaluated using the Structured Clinical Interview for DSM-IV-TR (SCID) to diagnose depression or anxiety disorders. Participants reported their sociodemographic characteristics, and underwent physical assessments to determine their disability status. Descriptive analyses and binary logistic regression models were used to determine sociodemographic and clinical factors associated with perceived need for mental health care. Results Of 255 participants enrolled, 251 were included in this analysis. Most participants were women, Caucasian, with post-secondary education, with a mean (SD) age at enrollment of 50.9 (12.9) years. They predominantly had a relapsing-remitting MS course. Nearly one-quarter of participants had a current SCID diagnosis of depression or anxiety (n = 57, 22.7%). Overall, 31.8% (n = 80) of participants reported a need for mental health care. These individuals were slightly younger at enrollment (p = 0.037), but otherwise did not differ with respect to sociodemographic characteristics, compared to participants not reporting this need. Those identifying need for mental health care also had an earlier age of MS symptom onset (p = 0.011). After adjusting for sociodemographic and clinical factors, elevated symptoms of depression (odds ratio [OR] 2.36; 95%CI: 1.06, 5.25) and anxiety (OR 6.08; 95%CI: 2.78, 13.3) were associated with an increased likelihood of reporting a need for mental health care. Any current SCID diagnosis of depression or anxiety was not associated with perceived need for mental health care after accounting for symptoms of depression and anxiety. Conclusions One-third of people with MS identified a need for mental health care. Symptoms of anxiety and depression, but not current diagnosed mental health disorders, were the predominant factors associated with a perceived need for care.

Background We evaluated the validity and reliability of multiple symptom scales for depression and anxiety for persons with inflammatory bowel disease (IBD). Methods IBD participants in a cohort study completed a Structured Clinical Interview for DSM-IV-TR Axis I Disorders (SCID) and completed the Patient Health Questionnaire (PHQ-9), Hospital Anxiety and Depression Scale (HADS), Kessler-6 Distress Scale, PROMIS Emotional Distress Depression Short-Form 8a (PROMIS Depression) and Anxiety Short-Form 8a (PROMIS Anxiety), Generalized Anxiety Disorder 7-item Scale, and Overall Anxiety and Severity Impairment Scale. We computed sensitivity, specificity, and positive and negative predictive values for the screening measures with the SCID diagnoses as the reference standard, conducted receiver operating curve (ROC) analysis, and assessed internal consistency and test-retest reliability. Results Of 242 participants, the SCID classified 8.7% as having major depression and 17.8% as having anxiety disorders. Among the depression scales, the PHQ-9 had the highest sensitivity (95%). Specificity was generally higher than sensitivity and was highest for the HADS-D (cut-point of 11; 97%). The area under the ROC curve (AUC) did not differ significantly among depression scales. Among the anxiety scales, sensitivity was highest for the PROMIS (79%). Specificity ranged from 82% to 88% for all tools except the HADS-A (cut-point of 8; 65%). The AUC did not differ between depression and anxiety tools. Conclusions Overall, the symptom scales for depression and anxiety were similar in their psychometric properties. The anxiety scales did not perform as well as the depression scales. Alternate cut-points may be more relevant when these scales are used in an IBD sample.

Background Psychiatric comorbidity in inflammatory bowel disease (IBD) is well known; however, data from a truly representative sample are sparse. We aimed to estimate the incidence and prevalence of psychiatric disorders in an IBD cohort compared with a matched cohort without IBD. Methods Using population-based administrative health data from Manitoba, Canada, we identified all persons with incident IBD from 1989 to 2012 and a general population matched cohort (5:1). We applied validated algorithms for IBD, depression, anxiety disorders, bipolar disorder, and schizophrenia to determine the annual incidence of these conditions post-IBD diagnosis and their lifetime and current prevalence. Results There were 6119 incident cases of IBD and 30,573 matched individuals. After adjustment for age, sex, socioeconomic status, region of residence, and year, there was a higher incidence in the IBD cohort compared with controls for depression (incidence rate ratio [IRR], 1.58; 95% confidence interval [CI], 1.41-1.76), anxiety disorder (IRR, 1.39; 95% CI, 1.26-1.53), bipolar disorder (IRR, 1.82; 95% CI, 1.44-2.30), and schizophrenia (IRR, 1.64; 95% CI, 0.95-2.84). Incidence rate ratios were similar for Crohn's disease and ulcerative colitis between males and females and were stable over time. However, within the IBD cohort, the incidence rates of depression, anxiety, and bipolar disorders were higher among females, those aged 18-24 years vs those older than 44 years, urbanites, and those of lower socioeconomic status. The lifetime and current prevalence rates of psychiatric disorders were also higher in the IBD than the matched cohort. Conclusions The incidence and prevalence of psychiatric disorders are elevated in the IBD population.

Objective We aimed to evaluate the validity and reliability of multiple screening measures for depression and anxiety for use in the clinical care of people with multiple sclerosis (MS). Methods Participants with MS completed the Patient Health Questionnaire (PHQ-9), Hospital Anxiety and Depression Scale (HADS), Kessler-6 Distress Scale, PROMIS Emotional Distress Depression Short-Form 8a (PROMIS Depression) and Anxiety Short-Form 8a (PROMIS Anxiety), Generalized Anxiety Disorder 7-item Scale (GAD-7), and the Overall Anxiety and Severity Impairment Scale (OASIS). A subgroup repeated the screening measures two weeks later. All participants also completed a Structured Clinical Interview for DSM-IV-TR Axis I Disorders (SCID). For the screening measures we computed sensitivity, specificity, positive predictive and negative predictive value with SCID diagnoses as the reference standard and conducted receiver operating curve (ROC) analyses; we also assessed internal consistency and test-retest reliability. Results Of 253 participants, the SCID classified 10.3% with major depression and 14.6% with generalized anxiety disorder. Among the depression measures, the PHQ-9 had the highest sensitivity (84%). Specificity was generally higher than sensitivity, and was highest for the HADS-D with a cut-point of 11 (95%). In ROC analyses the area under the curve (AUC) did not differ between depression measures. Among the anxiety measures, sensitivity was highest for the HADS-A with a cut-point of 8 (82%). Specificity ranged from 83% to 86% for all measures except the HADS-A with a cut-point of 8 (68%). The AUC did not differ between anxiety measures. Conclusion Overall, performance of the depression and anxiety screening measures was very similar, with reasonable psychometric properties for the MS population, suggesting that other factors such as accessibility and ease of use could guide the choice of measure in clinical practice.

Previous studies have demonstrated that stress is associated with increased disease activity in individuals with inflammatory bowel disease (IBD). The association between perceived stress and gastrointestinal inflammation is not well described.Participants were recruited from a population-based registry of individuals with known IBD. Symptomatic disease activity was assessed using validated clinical indices: the Manitoba IBD Index (MIBDI) and Harvey Bradshaw Index (HBI) for Crohn's disease (CD), and Powell Tuck Index (PTI) for ulcerative colitis (UC). Perceived stress was measured using Cohen's Perceived Stress Scale (CPSS). Intestinal inflammation was determined through measurement of fecal calprotectin (FCAL), with a level exceeding 250 μg/g indicating significant inflammation. Logistic regressions were used to evaluate the association between intestinal inflammation, perceived stress, and disease activity.Of the 478 participants with completed surveys and stool samples, perceived stress was associated with symptomatic activity (MIBDI) for both CD and UC (1.07 per 1-point increase on the CPSS, 95% confidence interval (CI) 1.03-1.10 and 1.03-1.11, respectively). There was no significant association between perceived stress and intestinal inflammation for either CD or UC. Active symptoms (MIBDI ≤3) were associated with intestinal inflammation in UC (odds ratio (OR) 3.94, 95% CI 1.65-9.43), but not in CD (OR 0.98, 95% CI 0.51-1.88).Symptomatic disease activity was unrelated to intestinal inflammation in CD and only weakly associated in UC. Although there was a strong relationship between perceived stress and gastrointestinal symptoms, perceived stress was unrelated to concurrent intestinal inflammation. Longitudinal investigation is required to determine the directionality of the relationship between perceived stress, inflammation, and symptoms in IBD.

Restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA) is the surgical treatment of choice for patients with ulcerative colitis and familial polyposis who require colectomy. This surgical intervention allows for resection of colon, while offering intestinal continuity with fecal continence, discontinuation of most medications related to ulcerative colitis and reduction in the risk of colitis-associated neoplasia. As a proportion of these patients are women of childbearing age, it is important to understand the impact on reproductive health and function. Although limited data exist, restorative proctocolectomy/IPAA does not seem to adversely affect menstrual function. In general, sexual function is reported to improve postsurgery with the ability to achieve orgasm unaltered. However, dyspareunia is commonly reported post restoratively. Of concern, there are data to suggest that fertility is decreased post-IPAA. The reasons stated are pelvic adhesions and obstruction of fallopian tubes. Laparoscopic approach may improve fertility outcomes by reducing postoperative adhesions as compared with the open approach. Once achieved, pregnancy in patients with IPAA is characterized by a transient increase in stool frequency that resolves postdelivery. Whether vaginal delivery or cesarean section is preferred route of delivery in these patients is still controversial. But commonly cesarean section is advocated for patients' post-IPAA to prevent anal sphincter injury and long-term effects on pouch function. All of these issues should be included in the discussion with women who are contemplating IPAA, so they are well aware of them before deciding on the best management plan.

BACKGROUND: People with inflammatory bowel disease (IBD) require disease and lifestyle information to make health-related decisions in their daily lives. Derived from a larger qualitative study of the lived experiences of people with IBD, we report on findings that explored how people with IBD engage with health-related information in their daily lives. METHODS: Participants were recruited primarily from the Manitoba IBD Cohort Study. We used purposive sampling to select people with a breadth of characteristics and experiences. Individual interviews were audio-recorded and transcribed verbatim. Data were analyzed using inductive qualitative methods consistent with a phenomenological approach. RESULTS: Forty-five people with IBD participated; 51% were women. Findings highlighted the temporal and contextual influences on engagement with health-related information. Temporal influences were described as the changing need for health-related information over time. Participants identified 6 contextual factors influencing engagement with information to make health decisions: (1) emotional and attitudinal responses, (2) perceived benefits and risks, (3) trust in the source of the information, (4) knowledge and skills to access and use information, (5) availability of evidence to support decisions, and (6) social and economic environments. CONCLUSIONS: Findings illustrate the changing needs for health-related information over the course of IBD, and with evolving health and life circumstances. Practitioners can be responsive to information needs of people with IBD by having high-quality information available at the right time in a variety of formats and by supporting the incorporation of information in daily life.

Cross-sectional studies have identified high levels of fatigue in patients with active or quiescent inflammatory bowel disease (IBD), but there has been little attention to the long-term effects of fatigue in these patients. We performed a longitudinal study of fatigue in patients with IBD to determine its course and contributing factors.Data were obtained from participants in the Manitoba IBD Cohort Study (N = 312; 51% with Crohn's disease), a longitudinal population-based study. Symptomatic disease activity was measured every 6 months for 2 years to characterize long-term disease patterns as active, fluctuating, or inactive, based on the validated Manitoba IBD Index. We collected data concurrently on fatigue (Multidimensional Fatigue Inventory), psychological function, and laboratory biomarkers at the point of study entry and 1 and 2 years later.Of the study participants, 26% had consistently inactive, 29% had fluctuating, and 45% had consistently active disease over the 2-year time period. Mean levels of fatigue were strongly associated with disease activity; participants with consistently inactive disease had the lowest level of fatigue at each time point. Multivariate analyses indicated fatigue levels increased over time regardless of disease pattern (P.001). Adjusting for disease activity, disease type and age, sex (female; P.001), and psychological variables of distress (P.001), reduced psychological well-being (P = .002) and poor sleep quality (P.001) were associated independently with increases in fatigue over time.Fatigue can increase over time in patients with IBD, even when their disease is in remission. Psychological factors are useful targets for intervention to reduce fatigue.

OBJECTIVE: Patient experiences with endoscopy visits within a large central Canadian health region were evaluated to determine the relationship between the visit experience and the patients’ willingness to return for future endoscopy, and to identify the factors associated with patients’ willingness to return.METHODS: A self-report survey was distributed to 1200 consecutive individuals undergoing an upper and/or lower gastrointestinal endoscopy at any one of the six hospital-based endoscopy facilities in the region. The Spearman correlation coefficient was used to assess the association between the patients’ overall rating of the visits and willingness to return for repeat procedures under similar medical circumstances. Logistic regression analyses were performed to identify the factors associated with willingness to return for repeat endoscopy and overall satisfaction (rating) of the visit.RESULTS: A total of 529 (44%) individuals returned the questionnaire, with 45% rating the visit as excellent and 56% indicating they were extremely likely to return for repeat endoscopy. There was a low moderate correlation between overall rating of the visit and patients’ willingness to return for repeat endoscopy (r=0.30). The factors independently associated with patient willingness to return for repeat endoscopy included perceived technical skills of the endoscopists (OR 2.7 [95% CI 1.3 to 5.5]), absence of pain during the procedure (OR 2.2 [95% CI 1.3 to 3.6]) and history of previous endoscopy (OR 2.4 [95% CI 1.4 to 4.1]). In contrast, the independent factors associated with the overall rating of the visit included information provided pre- and postprocedure, wait time before and on the day of the visit, and the physical environment.CONCLUSIONS: To facilitate patient return for needed endoscopy, it is important to assess patients’ willingness to return because positive behavioural intent is not simply a function of satisfaction with the visit.

Objectives Comorbid depression and anxiety are common in inflammatory bowel disease (IBD), but few population-based estimates of the burden of depression and anxiety exist. Methods to support population-based studies are needed. We aimed to test the performance of administrative case definitions for depression and anxiety in IBD and to understand what the prevalence estimated using such definitions reflects. Methods We linked administrative (health claims) data from the province of Manitoba, Canada with clinical data for 266 persons in the Manitoba IBD Cohort Study. We compared the performance of administrative case definitions for depression and anxiety with (a) diagnoses of depression and anxiety as identified based on the Composite International Diagnostic Interview (CIDI), which identifies disorders meeting formal diagnostic criteria, and (b) participant report of physician-diagnosed depression or anxiety. Results Administrative definitions for depression showed moderate agreement with the CIDI (κ = 0.39–0.42). Agreement was higher with participant report of physician-diagnosed depression (κ = 0.54). The lifetime prevalence of depression was 29.3% based on the CIDI, 17.7% based on participant report of physician-diagnosed depression, and 21.8–22.5% based on administrative data. Compared to the CIDI, administrative definitions for anxiety showed fair agreement (κ = 0.21–0.25). The lifetime prevalence of anxiety was 31.2% based on the CIDI, 9.7% based on participant report of physician-diagnosed anxiety, and 24.4–31.9% based on administrative data. Conclusions Administrative data may be used for population-level surveillance of depression and anxiety in IBD, although they will not capture undiagnosed or untreated cases.

BACKGROUND: Understanding the information needs and preferred vehicles of information delivery to patients with inflammatory bowel disease (IBD) will enhance their care.OBJECTIVE: To survey persons with longstanding IBD as to their information needs and preferred vehicles of information delivery.METHODS: The population-based Manitoba IBD Cohort (n=271, mean disease duration 11 years) was surveyed to assess its information needs across 23 issues, both retrospectively at the time of diagnosis and currently.RESULTS: Most participants (64%) were initially diagnosed by a gastroenterologist, or otherwise by a family physician (19%) or surgeon (12%). Recalling time of diagnosis, at least 80% rated as very important information about common symptoms of IBD, possible complications, long-term prognosis, medication side effects, self management of symptoms and when to involve the doctor, yet only 10% to 36% believed they received the right amount of information about these issues. Dietary guidance was also regarded as important by 80% to 89%, yet only 8% to 16% received the correct amount of information. Regarding current needs, a large proportion believed it would be very helpful to have more information about long-term prognosis (66%) and diet considerations (60% to 68%). The following information sources were regarded as very acceptable: medical specialist (81%); brochure (79%); family doctor (64%); and website (64%), with 51% ranking the medical specialist as the first choice. In a comparison of the responses of this cohort to those of a recently diagnosed sample, there was remarkable consistency in the information needs and most desired sources of information.DISCUSSION: In the present population-based cohort with longstanding disease, dietary information was regarded as the least adequately addressed. There was clear openness to receiving information through other routes than just the medical specialist, suggesting that optimizing brochures and websites would be an important adjunct source of information.CONCLUSION: Approximately 10 years after diagnosis, only a small percentage of persons with IBD believed they received the correct amount of information about the issues they regarded as most important to have discussed at diagnosis.

Background: There has been little investigation of fatigue, a common symptom in inflammatory bowel disease (IBD). The aim of this study was to evaluate fatigue more comprehensively, considering relationships with psychological and biological factors simultaneously in a population-based IBD community sample. Methods: Manitoba IBD Cohort Study participants (n = 318; 51% Crohn's disease [CD]) were assessed by survey, interview, and blood sample. Fatigue, sleep quality, daytime drowsiness, stress, psychological distress, and quality of life were measured with validated scales. Hemoglobin (Hg) and C-reactive protein (CRP) levels were also obtained. Differences were tested across disease activity and disease subtype. Results: Elevated CRP was found for 23% of the sample and 12% were anemic; 46% had active disease. Overall, 72% of those with active and 30% with inactive disease reached clinical thresholds for fatigue (Multidimensional Fatigue Inventory; P < 0.001); 77% and 49% of those with active or inactive disease, respectively, experienced poor sleep (P < 0.001). There were few differences between those with CD and ulcerative colitis (UC) on the factors assessed, except for higher CRP levels in CD (mean 8.8 versus 5.3, P < 0.02). Multiple logistic regression analyses found that elevated fatigue was associated with active disease (odds ratio [OR] 4.2, 95% confidence interval [CI] 2.2–7.8), poor sleep quality (OR 4.0, 95% CI 1.9–8.6), and perceived stress (OR 4.2, 95% CI 2.2–8.1), but not with hours of sleep, Hg, or CRP. Conclusions: Fatigue and poor sleep are not only highly prevalent in active disease, but both are still significant concerns for many with inactive disease. Psychological factors are associated with fatigue in IBD in addition to disease and sleep considerations. (Inflamm Bowel Dis 2011;)

OBJECTIVES: We aimed to determine whether any of the nonsteroidal anti-inflammatory drugs (NSAIDs), antibiotics, infections, and stress trigger symptomatic flares of inflammatory bowel diseases (IBDs). METHODS: Participants drawn from a population-based IBD research registry were surveyed every 3 months for 1 year. They simultaneously tracked the use of NSAIDs, antibiotics, infections, major life events, mood, and perceived stress. Social networks, childhood socioeconomic status, and smoking were assessed at baseline. Disease flare was identified using the Manitoba Inflammatory Bowel Disease Index, a validated disease activity index. Across any two consecutive survey periods, participants were categorized as having a flare (inactive/active), having no flare (inactive/inactive), or remaining active (active/active). Potential triggers were evaluated for the first 3-month period to determine predictive rather than concurrent relationships. Data from only one pair of 3-month periods from an individual were analyzed. RESULTS: A total of 704 participants completed the baseline survey; 552 (78.3%) returned all 5 surveys. In all, 174 participants who had a flare were compared with 209 who had no flare. Perceived stress, negative affect (mood), and major life events were the only trigger variables significantly associated with flares. There were no differences between those who flared and those who did not, in the use of NSAIDs, antibiotics, or in the presence of infections. Multivariate logistic regression analyses indicated that only high-perceived stress (adjusted odds ratio=2.40 (1.35, 4.26)) was associated with an increased risk of flare. CONCLUSIONS: This study adds to the growing evidence that psychological factors contribute to IBD symptom flares. There was no support for differential rates of use of NSAIDS, antibiotics, or for the occurrence of (non-enteric) infections related to IBD flares.

This study compares a community inflammatory bowel disease (IBD) sample of individuals with a matched non-IBD community sample of individuals on psychological functioning and health perceptions.Participants in the population-based Manitoba IBD Cohort Study (n=388) were directly compared with sex-, age-, and region-matched controls from a national random-sample health survey on the aspects of psychological health, coping, and perceived general health.Overall, the IBD sample had lower psychological well-being and mastery, as well as higher distress than did the non-IBD controls (Por=0.02). Those with IBD used avoidant coping significantly more often, and active coping modestly more often than did the non-IBD sample; both had similar levels of "self-soothing" behaviors. Patients with Crohn's disease and ulcerative colitis had similarly poor levels of functioning along these dimensions compared with the non-IBD sample, as did those with active disease (P0.01). However, those with inactive disease were similar to the non-IBD sample, and had modestly higher mastery levels. Whereas nearly half of the non-IBD group reported chronic health conditions, those with IBD were threefold more likely to report poorer health (odds ratio 3.07, 95% confidence interval: 2.10-4.47). Psychological factors explained a greater amount of variance in perceived health for the IBD than for the non-IBD sample.Those with IBD have significantly poorer psychological health than do those without IBD and view their general health status more negatively, although adaptive stress-coping strategies were similar. However, when disease is quiescent there is little detriment to functioning. Active disease should be a flag to consider psychological needs in the care of an IBD patient.

Given the impact of anxiety and mood disorders on health, it is important to consider these disorders in persons with inflammatory bowel disease (IBD). We assessed the prevalence of anxiety and mood disorders in a population-based IBD cohort.A structured diagnostic interview was administered to participants in the cohort (N = 351), and rates were compared to age-, gender-, and region-matched controls drawn from a national survey (N = 779).A comparison of lifetime prevalence suggests higher rates of panic, generalized anxiety, and obsessive-compulsive disorders and major depression and lower rates of social anxiety and bipolar disorders in the IBD sample than in national samples in the United States and New Zealand. Direct comparisons with matched controls (with data available for three anxiety disorders) found lifetime prevalence (IBD vs controls) as follows: social anxiety disorder lower in IBD (6%vs 11%, OR 0.52, 95% CI 0.32-0.85), panic disorder not significantly different (8.0%vs 4.7%, OR 1.59, 95% CI 0.96-2.63), agoraphobia without panic not significantly different (1.1%vs 0.6%, OR 1.44, 95% CI 0.37-5.55), and major depression higher (27.2%vs 12.3%, OR 2.20, 95% CI 1.64-2.95). Comparing IBD respondents with and without lifetime anxiety or mood disorder, those with a disorder reported lower quality of life and earlier onset of IBD symptoms and there was a trend toward earlier IBD diagnosis.Clinicians should be aware of the increased prevalence of depression and possibly other anxiety disorders in persons with IBD as these disorders may influence response to treatment and quality of life.

Background: The Manitoba IBD Cohort Study is a longitudinal, population-based study of multiple determinants of health outcomes in persons with inflammatory bowel disease (IBD) diagnosed within 7 years at enrollment. In this cross-sectional substudy we compared IBD participants' levels of social support, self-perceived stress, disability, and access to healthcare with those of a matched community sample. Methods: IBD participants (n = 388) were interviewed using the Canadian Community Health Surveys (CCHS) 1.1 and 1.2 to assess psychosocial variables. The national CCHS data were accessed to extract a community comparison group, matched on age, sex, and geographic residence. Results: Compared to the community sample, IBD participants received more tangible, affective, or emotional support in the past year and were more likely to have experienced a positive social interaction. Those with IBD were as likely to be employed as those in the community sample, although they reported greater rates of reduced activity and days missed. Work was not identified as a significant source of stress, but physical health was more likely to be identified as a main stressor by those with active IBD compared to the non-IBD sample. Individuals with IBD were twice as likely to report unmet healthcare needs than the community sample; however, there was agreement across both groups regarding common barriers, including long waits and availability. Conclusions: While the disease may contribute to greater interference with work quality and daily activities, IBD patients have similar levels of stress and appear to have enhanced social supports relative to those in the community without IBD. (Inflamm Bowel Dis 2008)

BACKGROUND: Colon cancer screening, including colonoscopy, lags behind other forms of cancer screening for participation rates. The intrinsic nature of the endoscopic procedure may be an important barrier that limits patients from finding this test acceptable and affects willingness to undergo screening. With colon cancer screening programs emerging in Canada, test characteristics and their impact on acceptance warrant consideration.OBJECTIVES: To measure the acceptability of colonoscopy and define factors that contribute to procedural acceptability, in relation to another invasive gastrointestinal scope procedure, gastroscopy.PATIENTS AND METHODS: Consecutive patients undergoing a colonoscopy (n=55) or a gastroscopy (n=33) were recruited. Their procedural experience was evaluated and compared pre-endoscopy, immediately before testing and postendoscopy. Questionnaires were used to capture multiple domains of the endoscopy experience and patient characteristics.RESULTS: Patient scope groups did not differ preprocedurally for general or procedure-specific anxiety. However, the colonoscopy group did anticipate more pain. Those who had a gastroscopy demonstrated higher preprocedural acceptance than those who had a colonoscopy. The colonoscopy group had a significant decrease in scope concerns and anxiety postprocedurally. As well, they reported less pain than they anticipated. Regardless, postprocedurally, the colonoscopy group’s acceptance did not increase significantly, whereas the gastroscopy group was almost unanimous in their test acceptance. The best predictor of pretest acceptability of colonoscopy was anticipated pain.CONCLUSIONS: The findings indicate that concerns that relate specifically to colonoscopy, including anticipated pain, influence acceptability of the procedure. However, the experience of a colonoscopy does not lead to improved test acceptance, despite decreases in procedural anxiety and pain. Patients’ preprocedural views of the test are most important and should be addressed directly to potentially improve participation in colonoscopy.

Objective To assess the relationship between self-reported adherence to a gluten-free diet (GFD) and the ability to determine correctly the appropriateness of particular foods in a GFD. Methods Persons with celiac disease were recruited through clinics and support groups. Participants completed a questionnaire with items related to GFD information sources, gluten content of 17 common foods (food to avoid, food allowed, and food to question), GFD adherence, and demographic characteristics. Diagnosis was self-reported. Results The 82 respondents (88% female) had a median of 6 y GFD experience. Most (55%) reported strict adherence, 18% reported intentional gluten consumption and 21% acknowledged rare unintentional gluten consumption. Cookbooks, advocacy groups, and print media were the most commonly used GFD information sources (85–92%). No participant identified correctly the gluten content of all 17 foods; only 30% identified at least 14 foods correctly. The median score on the Gluten-Free Diet Knowledge Scale (GFD-KS) was 11.5 (interquartile ratio, 10–13). One in five incorrect responses put the respondent at risk of consuming gluten. GFD-KS scores did not correlate with self-reported adherence or GFD duration. Patient advocacy group members scored significantly higher on the GFD-KS than non-members (12.3 versus 10.6; P Conclusions Self-report measures which do not account for the possibility of unintentional gluten ingestion overestimate GFD adherence. Individuals who believe they are following a GFD are not readily able to correctly identify foods that are GF, which suggests ongoing gluten consumption may be occurring, even among patients who believe they are "strictly" adherent. The role of patient advocacy groups and education to improve outcomes through improved adherence to a GFD requires further research.

Background A gluten-free diet (GFD) requires tremendous dedication, involving substantive changes to diet and lifestyle that may have a significant impact upon quality of life. The present study aimed io assess dietary adherence, knowledge of a GFD, and the emotional and lifestyle impact of a GFD. Methods Community dwelling adults following a GFD completed a questionnaire with items related to reasons for avoiding gluten, diagnostic testing, GFD adherence, knowledge and sources of information about a GFD, the Work and Social Adjustment Scale, and the effect of a GFD diet on lifestyle, feelings and behaviours. Results Strict GFD adherence among the 222 coeliac disease (CD) patients was 56%. Non-CD individuals (n = 38) were more likely to intentionally ingest gluten (odds ratio = 3.7; 95% confidence interval = 1.4–9.4). The adverse impact of a GFD was modest but most pronounced in the social domain. Eating shifted from the public to the domestic sphere and there were feelings of social isolation. Affective responses reflected resilience because acceptance and relief were experienced more commonly than anxiety or anger. Non-CD respondents were less knowledgeable and less likely to consult health professionals. They experienced less anger and depression and greater pleasure in eating than CD respondents. Conclusions The findings obtained in the present suggest there is good potential for positive adaptation to the demands of a GFD; nevertheless, there is a measurable degree of social impairment that merits further study. The GFD may be a viable treatment option for conditions other than CD; however, education strategies regarding the need for diagnostic testing to exclude CD are required.

The Manitoba Inflammatory Bowel Disease (IBD) Cohort Study is a population-based prospective cohort study of recently diagnosed IBD (n=396). At enrollment, 162 (41%) indicated gastrointestinal symptomor=3 years before diagnosis. We aimed to determine whether coexistence of irritable bowel syndrome (IBS) had a role in symptoms before IBD diagnosis.Patients were interviewed about symptoms and investigations before IBD diagnosis. Patients were assessed retrospectively for preexisting IBS.Of 112 patients interviewed, 58% had Crohn's disease, 37% UC, 3% proctitis, and 2% indeterminant colitis. Symptoms at IBD diagnosis were considered the same (7%), worse (43%), different (20%), or both worse and different (30%) than at initial onset. Mean time between initial symptoms and diagnosis was 11 years (range, 3-48 years). Increasing age at IBD diagnosis correlated with a longer period after initial symptoms and diagnosis of IBD (r=.32, P.0001). Gender and specific IBD diagnosis had no effect on this time period. Patients were identified as no previous IBS (51%), likely IBS (25%), and possible IBS (24%). Those with likely and possible IBS had a trend toward longer symptom duration before IBD diagnosis than those without IBS (P=.07). Of the total IBD cohort (n=396), considering only those with symptoms foror=3 years before diagnosis, 14% were considered to have likely or possible IBS.These data suggest that older patients and those with likely and possible preexisting IBS are more likely to experience longer symptom duration before diagnosis of IBD. The prevalence rate of IBS was similar to estimated base rates in the general population.

OBJECTIVES: We explored whether iron deficiency in the absence of anemia is associated with fatigue in inflammatory bowel disease (IBD). METHODS: We assessed iron deficiency and anemia in 280 participants from the population-based Manitoba IBD Cohort Study. RESULTS: Iron deficiency was identified in 20% with Crohn's disease and 27% with ulcerative colitis. Anemia was identified overall in 50 (18%), with 230 who were nonanemic. In the nonanemic subgroup, there were no significant differences between iron-deficient and -sufficient groups in mean fatigue levels or proportions with problematic fatigue. There was no unique contribution of iron deficiency to problematic fatigue after adjustment for active disease and anemia. CONCLUSIONS: There was no evidence of an association between iron deficiency and fatigue in the absence of anemia, suggesting that iron deficiency is not a clinically relevant contributor to fatigue in IBD.

Summary Background Predictors of complicated Crohn's disease (CD), defined as stricturing or penetrating behaviour, and surgery have largely been derived from referral centre populations. Aim To investigate whether serological markers, susceptibility genes or psychological characteristics are associated with complicated CD or surgery in a population-based cohort. Methods One hundred and eighty-two members of the Manitoba IBD Cohort with CD phenotyped using the Montreal classification underwent genetic and serological analysis at enrolment and after 5 years. One hundred and twenty-seven had paired sera at baseline and 5 years later and their data were used to predict outcomes at a median of 9.3 years. Serological analysis consisted of a seven antibody panel, and DNA was tested for CD-associated NOD2 variants (rs2066845,rs2076756,rs2066847), ATG16L1 (rs3828309, rs2241880) and IL23R (rs11465804). Psychological characteristics were assessed using semi-structured interviews and validated survey measures. Results Sixty-five per cent had complicated CD and 42% underwent surgery. Multivariate analysis indicated that only ASCA IgG-positive serology was predictive of stricturing/penetrating behaviour (OR = 3.01; 95% CI: 1.28–7.09; P = 0.01) and ileal CD (OR = 2.2; 95% CI: 1.07–4.54, P = 0.03). Complicated CD behaviour was strongly associated with surgery (OR = 5.6; 95% CI: 2.43–12.91; P

Persons with inflammatory bowel disease (IBD) are reported to have a high prevalence of osteoporosis and reduced bone mineral density (BMD) and to be at higher risk of fracture. The course of BMD loss over time is poorly characterized in persons with IBD. Eighty-six persons, stratified by age, were enrolled from a population-based longitudinal IBD cohort study to undergo BMD testing at baseline, with final BMD testing a mean of 4.3 years later. The proportion of subjects with significant change in BMD at the lumbar spine, total hip, and femoral neck was assessed, as were clinical, biochemical, and anthropomorphic changes. Vertebral radiographs were also obtained at baseline and at the end of follow-up in those aged 50 years and above to detect vertebral fractures. The change in BMD seen in this cohort of IBD patients was similar to the expected rate of BMD loss in the general population. Age50 years, decreasing body mass index (BMI), and corticosteroid use were most notably correlated with BMD loss. Subjects aged50 years did not have statistically significant declines in BMD. IBD symptom activity scores correlated poorly with BMD loss. Vertebral fractures were uncommon, with only two subjects out of 4150 years old developing a definite radiographic fracture over the course of follow-up. No major nonvertebral fractures were observed. Patients with IBD do not appear to have significantly accelerated BMD loss. Older age, decreasing BMI, and corticosteroid use may identify IBD patients at greater risk for BMD loss.

Response shift (RS), a change in the meaning of an individual’s self-evaluation of a target construct, such as health-related quality of life (HRQOL), can affect the interpretation of change in measures of the construct collected over time. This study proposes new statistical methods to test for reprioritization RS, in which the relative importance of HRQOL domains changes over time. The methods use descriptive discriminant analysis or logistic regression models and bootstrap inference to test for change in relative importance weights (Method 1) or ranks (Method 2) for discriminating between patient groups at two occasions. The methods are demonstrated using data from the Manitoba Inflammatory Bowel Disease (IBD) Cohort Study (n = 388). Reprioritization of domains from the IBD Questionnaire (IBDQ) and SF-36 was investigated for groups with active and inactive disease symptoms. The IBDQ bowel symptoms and SF-36 bodily pain domains had the highest ranks for group discrimination. Using Method 1, there was evidence of reprioritization RS in the IBDQ social functioning domain and the SF-36 bodily pain and social functioning domains. Method 2 did not detect change for any of the domains. Compared to IBD patients without active disease symptoms, those with active symptoms were likely to change the meaning of their self-evaluations of pain and social interactions. Further research is needed to compare these new RS detection methods under a variety of data analytic conditions before recommendations about the optimal method can be made.