Rachel Carr

A population-based study of fatigue and sleep difficulties in inflammatory bowel disease

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% Crohns 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;)

Information needs and preferences of recently diagnosed patients with inflammatory bowel disease

Background: The aim of this study was to assess the information needs and experiences of patients who were recently diagnosed with inflammatory bowel disease (IBD). Methods: Seventy‐four patients, diagnosed with Crohns disease or ulcerative colitis, 3‐24 months previously were recruited from gastroenterology practices and completed the information needs survey. Results: The most frequent sources of information in the first 2 months after diagnosis were the gastroenterologist and the Internet. In all, 24% of patients reported feeling dissatisfied with the information they were given at the time of their diagnosis, 31% were moderately satisfied, and 45% were very satisfied. There were many areas of information about the disease, its treatment, and self management that patients considered to be important and received little or no information about. When patients described how they would prefer to receive information if they were considering a new treatment in the future, 68% indicated that they preferred information from a medical specialist. Conclusions: Given the large number of topics judged by patients to be important and the complexity of the information required, it would be very difficult to communicate this information in oral discussion during typical consultation visits. Supplementing physician‐patient consultations with well‐designed written information or a Website recommendation may produce more effective communication and education. Patients rated these sources of information as having a high level of acceptability. Inflamm Bowel Dis 2011

Changes in Fatigue Over 2 Years Are Associated With Activity of Inflammatory Bowel Disease and Psychological Factors

BACKGROUND & AIMS 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. METHODS Data were obtained from participants in the Manitoba IBD Cohort Study (N = 312; 51% with Crohns 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. RESULTS 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. CONCLUSIONS 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.

What Are Adults With Inflammatory Bowel Disease (IBD) Eating? A Closer Look at the Dietary Habits of a Population-Based Canadian IBD Cohort

BACKGROUND A comprehensive study of what individuals with inflammatory bowel disease (IBD) are eating that encompasses food avoidance, dietary sugar consumption, and a comparison with the non-IBD Canadian population has not been documented. The aim was to analyze these interrelated dietary components. METHODS Food avoidance and sugar intake data were collected from 319 patients with IBD enrolled in the University of Manitoba IBD Cohort Study. Diets of those with IBD (n = 256) were compared with a matched, non-IBD Canadian cohort using the nutrition questions obtained from the Canadian Health Measures Survey (CHMS). RESULTS Food avoidance among IBD is prevalent for alcohol, popcorn, legumes, nuts, seeds, deep-fried food, and processed deli meat, with a higher prevalence among those with active IBD. Patients with active IBD also consumed significantly more portions of sports drinks and sweetened beverages compared with those with inactive disease. Compared with the non-IBD Canadian population, patients with IBD consume significantly less iron-rich food but more milk. CONCLUSIONS Food avoidance is common among those with IBD but may be due more to personal preferences, while sugar-laden beverages may be displacing other foods higher in nutrients. The overall diet of patients with IBD differed from that of the non-IBD Canadian population, but deficiencies were observed in both groups. Considering malnutrition among persons living with IBD, nutrition education by trained dietitians as part of the IBD team is imperative to address food avoidance and overall balance nutrition as part of treating and preventing nutrition deficiencies.

The Information Needs and Preferences of Persons with Longstanding Inflammatory Bowel Disease

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.

Is Iron Deficiency in the Absence of Anemia Associated With Fatigue in Inflammatory Bowel Disease

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.

A Longitudinal Study of Fatigue and Disease Activity in Inflammatory Bowel Disease

Background: Fatigue is a troubling problem for IBD patients and physicians alike. Recent population-based cohort studies by our group (Inflam Bowel Dis in press) and others have identified high levels of fatigue both when IBD is active (70-77%) and quiescent (30-36%). No previous studies have looked at fatigue over time in IBD. Methods: Data were obtained from Manitoba IBD Cohort Study participants (n=318; 51% Crohns disease CD), a longitudinal population based study of persons diagnosed within 7 years of enrolment. Disease activity was measured every 6 months for 2 years to characterize long-term disease pattern as active, fluctuating or inactive, using the validated Manitoba IBD Index (Am J Gastro 2009). Fatigue (Multidimensional Fatigue Inventory), psychological functioning, and blood markers were assessed concurrently at baseline and 1 and 2 years later. Results: 31% had consistently inactive, 28% had fluctuating, and 42% had consistently active disease across the two years. Fatigue levels mapped approximately to disease patterns, with lowest average fatigue at each time point for those with consistently inactive disease (see table). A mixedeffects regression model with a random intercept showed that fatigue levels increased over time regardless of disease pattern (F=8.38,p=0.004). There was substantial individual variation in fatigue levels at baseline (intraclass correlation ICC=0.44), with minimal individualspecific variation in the rate of change over time. A disease pattern x subtype interaction (p=0.01) suggested that UC participants with consistently inactive disease had modestly higher fatigue on average than those with inactive CD. Adjusting for disease activity and type, other factors were also found to be independently associated with fatigue across time including poor sleep quality (F= 16.04,p<0.001), higher stress (F=6.89, p=0.01), distress (F=32.34,p<0.001) and higher C-reactive protein levels (F=4.20,p=.04). Conclusion: Fatigue may worsen over time in IBD, even when disease is in remission. Changes in psychological factors are associated with changes in fatigue across time, suggesting that they may be a useful target for intervention in order to impact fatigue. Fatigue levels at baseline, year 1 & 2 for CD and UC across disease activity patterns