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The Manitoba IBD Cohort Study //
This study was initiated in 2002 with funding from the Canadian Institutes of Health Research ($1.2 million). It is a population-based study where 388 subjects who were within 7 years of diagnosis of their IBD were enrolled. The participating persons have been followed annually with in-person interviews and with semi-annual mail-in surveys. The study was initiated to be a 5 year study and remarkably by the end of 5 years 353 persons were still participating (a loss of 1.8%/year). In January, 2008 the Canadian Institutes of Health Research announced that the study was being funded again ($1.5 million) to pursue another 5 years. The goal of the Manitoba IBD Cohort is to determine predictors of outcomes as well as to optimize management of various aspects of IBD.
The Manitoba IBD Cohort Study has been enormously successful. Participants range in age from 18-83 years old and 60% are females. Approximately two thirds live in Winnipeg and the rest live throughout Manitoba including Brandon, Dauphin, Swan River, Flin Flon, Thompson, Winkler and Steinbach. Some subjects live elsewhere in Canada, yet still maintain their participation. Linda Rogala and Norine Miller are our two research nurses who keep in close contact with the participants. We are grateful to the participants who continue with us and are helping to provide a wealth of research information. We continue to follow 270 subjects in this study which is now in its 9th year The Manitoba IBD Cohort Study has become internationally renowned and is one of the few follow up studies in the world conducted over several years of patients with IBD. The following are some of the findings from this study have been reported to date:
Publications // from the Manitoba IBD Cohort Study
Witges K, Bernstein CN, Sexton K, Afifi T, Walker JR, Nugent Z, Lix L. The relationship between adverse childhood experiences and healthcare use in the Manitoba IBD cohort study. Inflammatory Bowel Diseases 2019; 25: 1700-1710.
We aimed to determine the prevalence of adverse childhood experiences in persons with IBD and whether having adverse childhood experiences was associated with health care utilization post IBD diagnosis. 345 participants from the population-based Manitoba IBD Cohort Study self-reported adverse childhood experiences (i.e., physical abuse, sexual abuse, death of a very close friend or family member, severe illness or injury, upheaval between parents, and any other experience thought to significantly impacts one’s life or personality) at a median of 5.3 years following IBD diagnosis. Cohort Study data were linked to administrative health databases that captured use of hospitals, physician visits, and prescription drugs; use was classified as IBD- and non-IBD-related. The prevalence of at least one adverse childhood experiences was 74.2%. There was no statistically significant association between having experienced an adverse childhood experience and health care use. However, mean annual non-IBD-related general practitioner visits were significantly higher for participants exposed to physical and sexual abuse than those not exposed. Selected rates of IBD-related healthcare use were lower for participants who reported exposure to an upheaval between parents and high perceived trauma from adverse childhood experiences. In summary, the estimated prevalence of at least one self-reported adverse childhood experience in persons with diagnosed IBD was high. Health care use among those who experienced adverse childhood experiences may reflect the impacts of adverse childhood experiences on health care anxiety.
Frenkel S, Bernstein CN, Sargent M, Jiang W, Kuang Q, Xu W, Hu P. Copy number variation-based gene set analysis reveals cytokine signaling pathways associated with psychiatric comorbidity in patients with inflammatory bowel disease. Genomics 2019; S0888-7543(19);30081-3.
Recent studies discovered many genetic variants associated with both psychiatric and inflammatory disorders, but the role of genetic factors in the development of psychiatric comorbidity in inflammatory bowel disease is underexplored. Particularly, it has been shown that some of the genetic variants have been linked to the concentrations of circulating cytokines and symptoms of the inflammatory cytokine-associated depression. We analysed genomic features of individuals with IBD by comparing IBD patients with psychiatric comorbidity with those who have IBD but without psychiatric comorbidity. We hypothesized that cytokine related signaling pathways may be significantly associated with the psychiatric comorbidity in patients with IBD. Individuals enrolled in the Manitoba IBD Cohort Study were separated to two groups accordingly to the presence of psychiatric comorbidity. A sample set comprising 97 IBD individuals with psychiatric comorbidity and 146 IBD individuals without psychiatric comorbidity was first used to identify copy number variations (CNVs) from genome-wide genetic data using three different detection algorithms. IBD + psychiatric comorbidity and IBD without psychiatric comorbidity groups were compared by the number of CNVs overlapping each gene; deletions and duplications were analysed separately. Medium-sized CNV (size between 100 and 500 kilobase pairs)-burden is significantly higher in IBD + psychiatric comorbidity than the IBD without psychiatric comorbidity group. Gene-based CNV association analysis did not show significant differences between the two IBD groups. Gene set overrepresentation analysis demonstrated the significant enrichment of gene sets related to cytokine signalling pathways by the genes overlapped by deletions in the IBD individuals with psychiatric comorbidity. Our results confirm the role of cytokine signalling pathways in the development of psychiatric comorbidity in IBD. Additionally, our results warrant further study with a larger sample size focusing on cytokine SNPs to further understand the relationship between inflammatory and psychiatric disorders.
Frenkel S, Bernstein CN, Sargent M, Kuang Q, Jiang W, Wei J, Thiruvahindrapuram B, Spriggs E, Scherer SW, Hu P. Genome-wide analysis identifies rare copy number variations associated with inflammatory bowel disease. PLOS One 2019; 14(6): e0217846. Published 2019 Jun 11.
We hypothesized that rare (<0.1% population frequency) gene copy number variations (CNVs) could play an important mechanism for risk of IBD. We aimed to examine changes in DNA copy number in a population-based cohort of patients with IBD and search for novel genetic risk factors for IBD. DNA samples from 243 individuals with IBD from the Manitoba IBD Cohort Study and 2988 healthy controls were analyzed using genome-wide SNP microarray technology. We identified IBD-associated genes affected by rare CNV from comparing the number of overlapping CNVs in IBD samples with the number of overlapping CNVs in controls for each gene. 4,402 CNVs detected by two or three algorithms intersected 7,061 genes, in at least one analyzed sample. Four genes (e.g. DUSP22 and IP6K3) intersected by rare deletions and fourteen genes (e.g. SLC25A10, PSPN, GTF2F1) intersected by rare duplications demonstrated significant association with IBD (FDR-adjusted p-value < 0.01). Of these, ten genes were functionally related to immune response and intracellular signalling pathways. Some of these genes were also identified in other IBD related genome-wide association studies. These suggested that the identified genes may play a role in the risk of IBD.
Our results revealed new genomic loci associated with IBD, which suggested the role of rare CNVs in IBD risk.
Frenkel S, Bernstein CN, Jin YW, Sargent M, Kuang Q, Jiang W, Wei J, Thiruvahindrapuram B, Scherer SW, Hu P. Genome-wide copy number variant data for inflammatory bowel disease in a Caucasian population. Data in Brief 2019; Jul 2; 25:104203.
Genome-wide copy-number association studies offer new opportunities to identify the mechanisms underlying complex diseases, including chronic inflammatory, psychiatric disorders and others. We have used genotyping microarrays to analyse the copy-number variants (CNVs) from 243 Caucasian individuals with inflammatory bowel disease. The CNV data was obtained by using multiple quality control measures and merging the results of three different CNV detection algorithms: PennCNV, iPattern, and QuantiSNP. The final dataset contains 4,402 CNVs detected by two or three algorithms independently with high confidence. This paper provides a detailed description of the data generation and quality control steps. For further interpretation of the data presented in this article, please see the research article entitled Copy number variation-based gene set analysis reveals cytokine signalling pathways associated with psychiatric comorbidity in patients with inflammatory bowel disease.
Restall GJ, Simms AM, Walker, JR, Haviva C, Graff LA, Sexton KA, Miller,. Targownik LE, Bernstein CN. Coping with inflammatory bowel disease: engaging with information to inform health-related decision-making in daily life. Inflammatory Bowel Disease 2017; 23: 1247-56.
We undertook a qualitative study exploring how persons with IBD engage with health-related information in their daily lives. 45 persons underwent in depth open ended interviews exploring a variety of topics related to living with IBD.Data were analyzed using inductive qualitative methods consistent with a phenomenological approach. There was a near equal distribution of males and females. 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. Our findings illustrated 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.
Graff LA, Sexton KA, Walker JR, Clara I, Targownik LE. Validating a measure of patient self-efficacy in disease self-management using a population-based IBD cohort: the IBD Self-Efficacy Scale. Inflammatory Bowel Diseases 2016; 22: 2165-72.
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 disease specific. This study aims to provide validation of the Inflammatory Bowel Disease Self-Efficacy scale (IBD-SE), using a population-based IBD sample. Manitoba IBD Cohort Study participants completed a survey and clinical interview at a mean of 12 years after diagnosis (121 with Crohn's disease; 108 with 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. The IBD-SE had high internal consistency (Cronbach's α = 0.97), and a 4-factor structure was confirmed. The IBD-SE was strongly correlated with mastery, measures of psychological well-being, stress, distress, disability, disease-specific quality of life, and overall perceived health. Those with currently inactive disease had higher self-efficacy than the active disease group with similar findings for recent symptomatic disease activity. We concluded that 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.
Restall G, Simms A, Walker JR, Graff LA, Sexton KA, Rogala L, Miller N, Haviva C, Targownik LE, Bernstein CN. Understanding work experiences of people with inflammatory bowel disease. Inflammatory Bowel Diseases 2016; 22:1688-97.
People with IBD are at increased risk for unemployment and work absenteeism over the course of their adult lives. However, little is known about the first hand experiences of people living with the disease regarding perceived barriers, facilitators, and strategies for navigating work roles. 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. 45 people currently or previously in the workforce participated; 51% were female. The average age was 45 years and the average IBD duration was 11 years. Participants had a broad range of experiences in adapting to work roles. 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. In summary, 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.
Mayo NE, Scott SC, Bernstein CN, Lix LM. How are you? Do people with inflammatory bowel disease experience response shift on this question? Health and Quality of Life Outcomes 2015; May 6: 13: 52.
As individuals experience changes in their health, they may alter the way they evaluate health and quality of life. The purpose of this study was to estimate the extent to which individuals with IBD change their rating of health over time because of response shift especially in relation to a single question on self-rated health. Disease activity, vitality, pain, somatization, and physical and social function explained 51% of the variation in general health over two years with no evidence of response shift in the majority of the sample. Negative response shift was found for 8%, who initially rated health better than predicted; positive response shift was found for 6%. The positive response shift group was younger and had better baseline scores on measures of general health, hostility, pain, mental health and social and role function. Less pain and better social function scores at baseline were predictors of negative response shift. In conclusion, the majority of people with IBD did not demonstrate a response shift indicating that the health rating over time was stable in relation to that predicted by known time varying clinical variables. This adds to the evidence that the single question on self-rated health is useful for monitoring individuals over time.
Israeli E, Graff LA, Clara I, Walker JR, Lix LM, Targownik LE, Bernstein CN. Low prevalence of disability among patients with inflammatory bowel diseases a decade after diagnosis. Clinical Gastroenterology and Hepatology 2014; 12: 1330-7.
Disability is defined by chronic limitations that preclude the ability to engage in usual daily activities. Studies of disability in patients with IBD have focused on work and employment, with few descriptions of more general disability among multiple domains. We examined disability and the factors associated with it a decade after diagnosis in a population-based cohort of IBD patients. We interviewed 125 patients with Crohn's disease and 119 with ulcerative colitis from the Manitoba IBD Cohort study at 12 years after diagnosis. Disability was assessed by using 2 validated measures. Disease activity was assessed every 6 months, and long-term activity was defined as symptoms of active IBD at more than 65% of these 6 month assessments. Mean levels of disability were significantly higher among patients with Crohn's disease than those with UC. On the basis of the Work and Social Adjustment Scale, rates of disability were 19% among patients with Crohn's disease vs 11% among those with UC. Results from the World Health Organization Disability Assessment Schedule v.2 and the Work and Social Adjustment Scale correlated highly in both Crohn's disease and UC. Disability was associated with reduced quality of life. Long-term active disease and a lifetime history of major depression were associated with disability, whereas history of IBD-related surgeries or hospitalizations was not. We concluded that a minority of patients with IBD have significant disability after a decade of disease, although a higher proportion of patients with Crohn's disease are disabled than those with UC. Long-term active disease and psychological factors are important predictors of disability. Hence, depression in persons with IBD should be treated as aggressively as the IBD itself.
Ryan JD, Silverberg MS, Xu W, Graff LA, Targownik LE, Walker JR, Carr R, Clara I, Miller N, Rogala L, Bernstein CN. Predicting complicated Crohn’s disease and surgery: phenotypes, genetics, serology and psychological characteristics of a population based cohort. Alimentary Pharmacology and Therapeutics 2013; 38: 274-83.
We aimed to investigate whether serological markers, susceptibility genes or psychological characteristics are predictive of developing complicated Crohn’s disease or surgery. 182 members of the Manitoba IBD Cohort with Crohn’s disease were phenotyped using the Montreal classification which means that their disease presentation was carefully detailed. All underwent genetic and serological (blood) analysis at enrolment and after 5years. 127 had blood results available at baseline and 5 years later and their data were used to predict outcomes at nearly 10 years of disease duration. Serological analysis consisted of a seven antibody panel, and DNA was tested for Crohn’s disease-associated genes such as NOD2 variants (rs2066845,rs2076756,rs2066847), ATG16L1 (rs3828309, rs2241880) and IL23R (rs11465804). Psychological characteristics were assessed using semi-structured interviews and validated survey measures. 65% had complicated Crohn’ disease (meaning they had strictures or fistulas) and 42% underwent surgery. Multivariate analysis indicated that having a blood marker called ASCA IgG was 3 fold more likely of developing stricturing/penetrating behaviour and ileal Crohn’s disease was 2-fold more likely to develop stricturing/penetrating behaviour. Persons with this complicated Crohn’s disease behaviour had a 5-fold likelihood of surgery. Overall, though, the strongest predictor of complicated disease or surgery was having ASCA IgG antibody levels. Psychological characteristics were not significantly associated with disease behaviour, serological profile or genotype. We also found that ASCA positivity was stable over time meaning that if positive at baseline it was highly likely to still be positive 5 years later. We also found that the gene markers we studied did not predict te development of complicated disease or surgery.
Goldenberg BA, Graff LA, Clara I, Zarychanski R, Walker JR, Carr R, Rogala L, Miller N, Bernstein CN. Is iron deficiency in the absence of anemia associated with fatigue in inflammatory bowel disease? American Journal of Gastroenterology 2013; 108: 1392-7.
Fatigue is a common symptom in persons with IBD even if their disease is inactive. One cause of fatigue can be anemia or having a low hemoglobin level. It is uncertain if simply having low iron levels can cause fatigue. Many people who get an iron infusion may claim to get a boost of energy. We explored whether iron deficiency in the absence of anemia is associated with fatigue in IBD. Fatigue was measured using the Multidimensional Fatigue Inventory survey. Iron deficiency was identified in 20% with Crohn's disease and 27% with ulcerative colitis. Anemia (low hemoglobin) was identified overall in18%, and 82% were nonanemic. In the nonanemic subgroup, there were no significant differences between persons with iron-deficiency and persons without iron deficiency for reported levels of fatigue or proportions with problematic fatigue. We concluded that 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.
Graff LA, Clara I, Walker JR, Lix L, Carr R, Miller N, Rogala L, Bernstein CN. Changes in fatigue over 2 years are associated with activity of inflammatory bowel disease and psychological factors. Clinical Gastroenterology and Hepatology 2013; 11: 1140-6.
We performed a longitudinal study of fatigue in patients with IBD to determine its course and contributing factors. 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 using a survey called the Multidimensional Fatigue Inventory, psychological function, and laboratory biomarkers at the point of study entry and 1 and 2 years later. 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. Fatigue levels increased over time regardless of disease activity pattern . Being female and having high psychological distress, reduced psychological well-being and poor sleep quality were associated independently with increases in fatigue over time. We concluded that fatigue can increase over time in patients with IBD, even when their disease is in remission. Psychological factors may be useful targets for intervention to reduce fatigue
Lix LM, Sajobi TT, Sawatzky R, Jiu J, Mayo NE, Huang Y, Graff LA, Walker JR, Ediger J, Clara I, Sexton K, Carr R, Bernstein CN. Relative importance measures for reprioritization response shift. Quality of Life Research 2012; 22: 695-703.
Response shift refers to a change in the meaning of an individual's self-evaluation of a target construct. In simple language- it refers to an individual changing responses to the same questions asked as part of a survey when the survey is repeatedly asked. When surveys are administered repeatedly, the researcher wants the truth and hopes that the respondent is not being biased in their answers, for instance, because they are tired of repeatedly answering the same questions. This study proposed new statistical methods to test for response shift in relation to surveys inquiring about health related quality of life. The study used quality of life questions from the Inflammatory Bowel Disease Quality of Life survey (IBDQ) and a generic quality of life measure called the S-36. We found that 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 further understand the implication of these response shifts in understanding the meaning of survey data we use repeatedly over time.
Targownik LE, Leslie WD, Carr R, Clara I, Miller N, Rogala L, Graff LA, Walker JR, Bernstein CN. Longitudinal change in bone mineral density in a population-based cohort of patients with inflammatory bowel disease. Calcific Tissue International 2012; 91: 356-61
Persons with inflammatory bowel disease 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. 86 persons, from the Manitoba IBD Cohort Study underwent 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 older 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. Age >50 years, decreasing body mass index (BMI), and corticosteroid use were most notably correlated with BMD loss. Subjects younger than 50 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 41 older than 50 years who developed a definite radiographic fracture over the course of follow-up. No major nonvertebral fractures were observed. We concluded that 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.
Rawsthorne P, Clara I, Graff LA, Bernstein KI, Carr R, Walker JR, Ediger J, Miller N, Rogala L, Bernstein CN. The Manitoba IBD Cohort Study: A prospective longitudinal evaluation of the use of complementary and alternative medicine and services. Gut 2012; 61:521-7.
Complementary and alternative medicine (CAM) are used by 40-50%of the population and similarly amongst persons with IBD. We have the opportunity with the Manitoba IBD Cohort Study to determine: a) the prevalence of CAM use in a population based sample of IBD subjects, b) the persistence of use over time (4.5 years), c) how much CAM used is an ingested product versus a service, d) how much CAM used is specifically for IBD reasons, e) personal variables that are associated with CAM use.
Persons participating in the Manitoba IBD Cohort Study completed surveys on their use of CAM products and services. 330 subjects completed all 4 surveys at 0, 12, 30 and 54 months. The questionnaires inquired about the use of 13 CAM service providers and 10 CAM products in the 12 months prior to the survey and whether the CAM use was specifically in relation to their IBD or not. Additional services or products were captured under the “Other” category.
Over a 4.5 year period 77% of IBD subjects in a population-based cohort try CAM services or products at some time and approximately 40% use CAM at any one time. However only 14% are consistent users. Of note, at most 10% are using CAM Products for their IBD (~40% of all CAM product users) and 6% are using CAM Services for their IBD (~12% of all CAM Service users). Females and persons with university degrees are more likely to use CAM, but disease diagnosis or activity did not predict CAM use. Immunosuppressant users were significantly less likely to use CAM. We concluded that clinicians need to make a bigger effort in understanding why patients choose CAM, how it benefits them, and consider any interactions in relation to conventional treatment.
We are in the process of analyzing data on fatigue in IBD, patients perceptions of what causes their IBD, determinants of patients adherence to therapy over time, and dietary intake among IBD patients compared to persons without IBD in the community.
Graff LA, Vincent N, Walker JR, Clara I, Carr R, Ediger J, Miller N, Rogala L, Rawsthorne P, Lix L, Bernstein CN. A population-based study of fatigue and sleep difficulties in inflammatory bowel disease. Inflammatory Bowel Diseases 2011; Sep;17(9):1882-9.
There has been little investigation of fatigue, a common symptom in IBD. The aim of this study was to evaluate fatigue more comprehensively, considering relationships with psychological and biological factors simultaneously in our Manitoba IBD Cohort. 318 participants ( 51% Crohn’s disease ) 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 and C-reactive protein (CRP) levels (a nonspecific blood test that reflects active inflammation) were also obtained. Differences were tested for those with Crohn’s disease versus ulcerative coltis and whether persons reported active disease symptoms or inactive disease. Data for this study were collected at 24 months after enrollment into the Manitoba IBD Cohort. We found that elevated CRP was found for 23% of the sample and 12% were anemic (had a low hemoglobin level); 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 Crohn’s disease and ulcerative colitis on the factors assessed, except for higher CRP levels in Crohn’s disease. 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. This means that persons with IBD with characteristics of active disease, poor sleep, or higher perceived stress were about 4 times more likely to have fatigue than persons with IBD without those characteristics. We concluded that 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.
Longobardi T, Walker JR, Graff LA, Bernstein CN. Health service utilization in IBD: comparison of self-report and administrative data. BMC Health Serv Res. 2011 May 31;11:137.
In understanding how often persons with IBD need to use health services (either doctor visits or hospitalizations) studies can be done either by asking persons directly (self-report) which has the hazard of the person’s ability to recall events over past time or by reviewing administrative data, such like that collected by Manitoba Health (administrative data). The problem with relying on administrative data is that there remains the possibility that data input into the record was erroneous (ie the person doing the coding had the wrong diagnosis) Hence we compared the reporting of 352 subjects within the Manitoba IBD Cohort of their visits over the past year to a doctor and as to their hospitalizations in the past year. Reports of recent antibiotic use were also recorded.
According to the administrative data, in the previous year, 15% of respondents had an overnight hospitalization, while 10% had an IBD-related hospitalization. Self-report concordance was highly sensitive (92%; 82%) and specific (96%; 97%, respectively). 97% of participants had contact with a physician in the previous year, and 69% had IBD-related visits. Physician visits were significantly under-reported and there was a trend to over-report the number of nights in hospital. We concluded that self-report data can be helpful in evaluating health service utilization, provided that the researcher is aware of the systematic sources of bias. Outpatient visits are well identified by self-report. The discordance for the type of outpatient visit (whether it was related to IBD or not) may be either a weakness of self-report or a flaw in diagnosis coding of the administrative data. If administrative data are not available, self-report information may be a cost-effective alternative, particularly for hospitalizations.
Sajobi TT, Lix LM, Clara I, Walker J, Graff LA, Rawsthorne P, Miller N, Rogala L, Carr R, Bernstein CN. Measures of relative importance for health-related quality of life. Quality of Life Research 2011 Apr 24. [Epub ahead of print]
This paper was undertaken to help us understand the optimal methods for doing health-related quality of life (HRQOL) studies in IBD. HRQOL data are often collected on multiple domains for two or more groups of study participants. Quantitative measures of relative importance, which are used to rank order the domains based on their ability to discriminate between groups, are an alternative to multiple tests of significance on the group differences. This study describes relative importance measures based on logistic regression and multivariate analysis of variance (MANOVA) models. Study participants with self-reported active (n = 244) and inactive (n = 105) disease were compared on 12 HRQOL domains from the Inflammatory Bowel Disease Questionnaire (IBDQ) and Medical Outcomes Study 36-item Short-Form (SF-36) Questionnaire. We found that all but two relative importance measures ranked the IBDQ bowel symptoms and emotional health domains as most important. We concluded that MANOVA-based importance measures are recommended for multivariate normal data and when group covariances are equal, while logistic regression measures are recommended for non-normal data and when the correlations among the domains are small. Relative importance measures can be used in exploratory studies to identify a small set of domains for further research.
Graff LA, Walker JR, Bernstein CN. Depression and anxiety in inflammatory bowel disease: A review of comorbidity and management. Inflammatory Bowel Diseases 2009; 15:1105-18.
Graff LA, Walker JR, Clara I, Lix L, Miller N, Rogala L, Rawsthorne P, Bernstein CN. Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. American Journal of Gastroenterology 2009; 104: 2959-69.
Clara I, Lix LM, Walker JR, Graff LA, Miller N, Rogala L, Rawsthorne P, Bernstein CN. The Manitoba IBD Index: Evidence for a New and Simple Indicator of IBD Activity. American Journal of Gastroenterology 2009; 104(7):1754-63.
Leslie WD, Miller N, Rogala L, Bernstein CN. Body mass and composition affect bone density in recently diagnosed inflammatory bowel disease: The Manitoba IBD Cohort Study. Inflammatory Bowel Diseases 2009; 15: 39-46.
A subgroup of 101 subjects from the overall study participated in a study examining bone outcomes. In this substudy we aimed to clarify the role of weight and body composition as a determinant of bone mineral density (BMD) in recently diagnosed IBD. Baseline BMD and body composition were measured and repeated 2.3 ± 0.3 y later. The greater the weight, height and body mass measurements the higher the bone density at all sites. While both fat tissue and lean tissue showed positive relationships with BMD, lean tissue showed a much stronger correlation than fat tissue especially for total hip. Increase (or decrease) in hip bone density was strongly associated with an increase (or decrease) in all body mass variables. We concluded that measures of body mass are important determinants of baseline BMD in recently diagnosed IBD patients. Furthermore, change in body mass correlated with change in BMD, especially at total hip. Early optimization and maintenance of nutrition and body weight, particularly toward lean tissue mass, may play an important role in preventing IBD-related bone disease. In other words it is important that with weight gain it is not any weight gain (i.e. fat tissue) but better that it is lean body mass.
Rogala L, Miller N, Graff LA, Rawsthorne P, Clara I, Walker JR, Lix L, Ediger JP, McPhail C, Bernstein CN. A population-based controlled study of social support, self-perceived stress, activity and work issues and access to health care in IBD. Inflammatory Bowel Diseases 2008; 14: 526-35.
In this study we compared IBD participants’ levels of social supports, self-perceived daily stress, disability and access to health care with those of a matched community sample. Compared to the community sample, those with IBD received more tangible, affective or emotional support in the prior year, and were more likely to have experienced a positive interaction, although support levels were generally high across both groups. Those with IBD were as likely to be employed as those in the community sample. However 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. There was agreement across both groups regarding common barriers including long waits and availability. These direct comparisons highlight that in some areas those with IBD manage similarly to the general community. These data also lend support to the IBD community that they are no less likely to be unemployed which could positively impact on their interaction with the insurance industry. However, we need to further explore the areas in which IBD patients feel they have unmet health care needs.
Lix LM, Graff LA, Walker JR, Clara I, Rawsthorne P, Rogala L, Miller N, Ediger J, Pretorius T, Bernstein CN. Longitudinal study of quality of life and psychological functioning for active, fluctuating, and inactive disease patterns in inflammatory bowel disease. Inflammatory Bowel Disease 2008; 14: 1575-84.
This study assesses quality of life and psychological functioning in IBD as related to patterns of disease activity over time. Based on their two-year pattern of self-reported disease activity, participants were assigned to one of three groups: consistently active, fluctuating, or consistently inactive disease. Half of the participants had fluctuating disease activity, while almost one-third of participants reported consistent active disease. Participants with the fluctuating activity pattern showed significant improvement in disease-specific quality of life compared to participants with consistent activity. Perceived stress, health anxiety, and pain anxiety decreased while pain catastrophizing and mastery increased over time, although the amount of change was not significantly different among disease activity patterns. However, when the data were averaged over time there were significant differences among disease activity patterns on most outcomes. We concluded that 1) change in IBD quality of life was influenced by one’s longitudinal profile of disease activity (whether it was always active, always inactive or fluctuating between active and inactive), but change in psychological functioning was not and 2) there were modest improvements in positive and negative psychological functioning suggesting that disease has an impact even when patients are not experiencing active symptoms.
Walker JR, Ediger JP, Graff LA, Greenfeld JM, Clara I, Lix L, Rawsthorne P, Miller N, Rogala L, McPhail C, Bernstein CN. The Manitoba IBD Cohort Study: A population-based study of the prevalence of lifetime and twelve-month anxiety and mood disorders. American Journal of Gastroenterology 2008; 103: 1989-97.
We aimed to determine if mood and anxiety disorders (current and lifetime) are more common in IBD than in a gender and age matched comparison sample from the same population. Much disability and functional impairment occuring in chronic health problems is associated with comorbidity with psychiatric disorders. For our study, Cohort participants were assessed using the Comprehensive International Diagnostic Interview (CIDI), the structured psychiatric interview used most extensively in research around the world, allowing comparison to recently published prevalence rates from community epidemiological studies. 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 US and New Zealand. Direct comparisons with matched controls (with data available for three anxiety disorders) found lifetime prevalence of panic disorder higher in IBD vs. controls; 8.0% vs. 4.7%, of social anxiety disorder lower in IBD vs controls; and of major depression higher in IBD vs controls (27.2% vs. 12.3%). Comparing IBD respondents with and without lifetime anxiety or mood disorder, those with a disorder reported earlier onset of IBD symptoms and there was a trend toward earlier IBD diagnosis. Hence, clinicians should be aware of the increased prevalence of depression and panic disorder and possibly other anxiety disorders in persons living with IBD as these disorders may influence response to treatment and quality of life.
Our group has previously conducted a number of studies exploring the increased risk of bone fractures and osteoporosis in IBD. Our goal is to determine the magnitude of changes in bone mineral density and to identify predictors of loss/gain of bone mass and fracture over time.
Leslie WD, Miller N, Rogala L, Bernstein CN. Vitamin D status and bone density in recently diagnosed inflammatory bowel disease: The Manitoba IBD Cohort Study. American Journal of Gastroenterology 2008; 103: 1451-9.
BMD is usually normal at the time of IBD diagnosis. This study’s objective was to clarify the role of vitamin D metabolism in recently diagnosed IBD. Baseline BMD and serum 25-hydroxy vitamin D (25OHD) were measured in the subgroup of 101 subjects who participated in the bone assessment substudy at baseline and at 2 years later. Only a minority (21.8%) of recently diagnosed IBD participants had optimal serum 25OHD levels (≥75 nmol/L). Serum 25OHD was positively correlated with baseline BMD at all sites. Gain in total body BMD between the baseline and follow up BMD was positively correlated with 25OHD. Poorer vitamin D status correlated with lower baseline BMD and better vitamin D status was correlated with a gain in total body BMD. Patients with IBD should take vitamin D supplements.
Adherence to medication regimens
Our goal is to determine the level of adherence with medication treatment over time and to determine predictors associated with high adherence rates.
Ediger JP, Walker JR, Graff L, Lix L, Clara I, Rawsthorne P, Rogala L, Miller N, McPhail C, Deering K, Bernstein CN. Predictors of medication adherence in inflammatory bowel disease. American Journal of Gastroenterology 2007;102: 1417-26.
Medication has become a major component of health care costs and adherence to treatment is an important issue. Despite widespread interest there is limited understanding of issues related to adherence and few data on the topic in IBD. Using a validated multi-item self-report measure, adherence was assessed as a continuous variable and then categorized as high or low. High adherence was reported by 73% of males and 63% of females. For males, predictors of low adherence included ulcerative colitis diagnosis (as opposed to Crohn’s disease) and being employed. For females, predictors of low adherence included younger age (<40). High scores on the Obstacles to Medication Use Scale (a scale designed to measure a number of possible obstacles to adherence to medications) strongly related to low adherence for both men and women. 5-ASA use was not related to adherence. For women, immunosuppressant use was associated with high adherence. A personality measure termed low trait agreeableness was associated with low adherence. Predictors of adherence differed markedly between genders, although obstacles such as medication cost were relevant for both men and women. We plan to study what factors impact on medication adherence over time and whether they change over time.