Ulcerative Colitis: Steder-Neukamm U

Janke KH, Steder-Neukamm U, Bauer M, Raible A, Meisner C, Hoffmann JC, Gregor M, Klump B, Häuser W. · Universitätsklinikum Tübingen, Abteilung Innere Medizin I, Kompetenznetz CED -- Core Facility Tübingen. · Gesundheitswesen. · Pubmed #16217720 No free full text.

Abstract: BACKGROUND: Health-related quality of life (HRQOL) is an important outcome-parameter in health research and care. The aim of the working group Quality of Life in the Competence Network Inflammatory Bowel Disease (IBD; in the original German: "Kompetenznetz chronisch entzündliche Darmerkrankungen") is to generate instruments for assessment of HRQOL and its implementation as standards in clinical trials, health care and research in IBD. METHODS: The Inflammatory Bowel Disease Questionnaire (IBDQ) is an international validated disease specific instrument for HRQOL-assessment. A German version of the IBDQ was elaborated and tested in 415 outpatients with Crohn's disease (CD, n = 306) and ulcerative colitis (UC, n = 109). The aim of the study was to compare the results of HRQOL-assessment (IBDQ-D) with international investigations, to correlate HRQOL results with disease activity and to preform a pretest of psychometric properties. RESULTS: International data suggest that the IBDQ-D is a suitable instrument for HRQOL-assessment in CD and UC. For both disease a statistically significant negative correlation with disease activity was found. Tested psychometric properties do not suggest that a revision of the IBDQ-D is required. The IBDQ-D offers the HRQOL-assessment as an primary or secondary outcome in clinical trials in IBD in Germany.

Langhorst J, Anthonisen IB, Steder-Neukamm U, Luedtke R, Spahn G, Michalsen A, Dobos GJ. · University of Duisburg-Essen, Department of Internal Medicine, Chair of Complementary and Integrative Medicine, Kliniken Essen-Mitte, Am Deimelsberg 34a, D-45276 Essen, Germany. · Complement Ther Med. · Pubmed #17352969 No free full text.

Abstract: INTRODUCTION: The reasons for using complementary and alternative medicine (CAM) and the perception of stress in a group of patients with inflammatory bowel disease (IBD) who are actively interested in CAM were compared with those of a randomly selected group of IBD patients (controls). METHODS: Participants in a national lay workshop on CAM of the German Crohn's and Ulcerative Colitis Association (DCCV) (the study group) and a representative sample of the approximately 16,000 members and associates of the DCCV (the control group) were asked to complete a self-administered questionnaire that covered socio-demographic data, past medical history, stress perception, current conventional treatment, and interest in, and usage of, CAM. RESULTS: One-hundred and twelve (80%) of the approximately 140 participants of the lay workshop and 684 (68.8%) of the 994 IBD patients in the control group completed and returned the questionnaires. The duration of illness, taken as the time since diagnosis, was shorter for the participants of the lay workshop than for the control group (p=0.0035), and fewer workshop patients stated that their disease was currently "in remission" (p=0.0377). The two groups did not differ significantly in their experiences with CAM use. Among personal reasons given for CAM use, the "lack of success of conventional therapy" (p=0.014), the wish "to take a holistic therapeutic approach" (p=0.0008), and "a different point of view from that of my physician about the cause of, and treatment options for, IBD" (p=0.038) were chosen more often in the group of workshop participants than in the control patients. A total of 92% of the workshop patients perceived stress as having a negative effect on their IBD; this is a significantly greater percentage than in the control group (70.5%; p=0.0001). CONCLUSIONS: A group of IBD patients with an active interest in CAM showed distinct differences from a randomly selected group of IBD patients in their reasons for using CAM, particularly in their wish to take a holistic therapeutic approach. Patients who think that stress has a negative effect on their IBD appear to be more likely to use CAM.

Janke KH, Klump B, Steder-Neukamm U, Hoffmann J, Häuser W. · Medizinische Klinik und Poliklinik, Abteilung Innere Medizin I, Universitätsklinikum Tübingen. · Psychother Psychosom Med Psychol. · Pubmed #16715461 No free full text.

Abstract: The Inflammatory Bowel Disease Questionnaire (IBDQ) is the standard disease-specific instrument for assessment of health-related quality of life (HRQOL) in patients with inflammatory bowel diseases (IBD). A German translation has not been validated. 415 outpatient IBD-patients (Crohn's Disease n = 306, Ulcerative Colitis n = 109) completed the German version of the IBDQ (Competence network IBD, IBDQ-D), the Hospital Anxiety and Depression Scale German Version (HADS-D) and the Questions on Life Satisfaction FLZ. Face validity was assessed by a physicians' and patients' panel. Disease activity was measured by the German Inflammatory Bowel Disease Activity Index (GIBDI). With 97.3 % completed items the acceptance was high. The Cronbach's alpha for the subscales ranged from 0.88 to 0.89. The correlation coefficients with comparable subscales of other instruments ranged between 0.09 and 0.70. Patients in remission and different disease activities differed significantly (p < 0.001) in all IBDQ-D-subscales.

Langhorst J, Anthonisen IB, Steder-Neukamm U, Lüdtke R, Spahn G, Michalsen A, Dobos GJ. · Department of Internal Medicine, Kliniken Essen-Mitte, Germany. · Inflamm Bowel Dis. · Pubmed #15735435 No free full text.

Abstract: OBJECTIVES: Previous studies have suggested that inflammatory bowel disease (IBD) patients rank high among users of complementary and alternative medicine (CAM). To further elucidate this phenomenon, we sent questionnaires to a large sample of IBD patients in Germany to determine the patterns and predictors of their CAM use. METHODS: Pretested 73-item questionnaires were mailed to a randomly selected representative sample of 1000 IBD patients from the approximately 16,000 members and associates of the German Crohn's and Colitis Association. Predictors of CAM use were evaluated by logistic regression models. RESULTS: Completed questionnaires were returned by 684 patients (female patients, 61.4%; Crohn's disease patients, 58.3%; ulcerative colitis patients, 38.2%). Of the 671 adult respondents, 344 (51.3%) had experience with CAM, and significantly more of the ulcerative colitis patients (59.8%) than the Crohn's disease patients (48.3%) had experience with CAM. There was no difference by gender. Homeopathy (52.9%) and herbal medicine (43.6%) were the most commonly used types of CAM. The most frequent personal reasons for CAM use were the search for an "optimum treatment" (78.9%) and the wish to stop taking steroids (63.8%). Using logistic regression, we found that total cortisone intake (P = 0.0077), but not duration of disease, was a strong predictor of CAM use. Other predictors were experience with psychosomatic and psychotherapeutic support (P = 0.0029), relaxation techniques (P = 0.0284), an academic education (P = 0.0173), a diet utilizing whole grains (P = 0.0123), and a normal body weight (P = 0.0215). Although 80% of patients indicated that they were interested in using CAM in the future, only 24.7% felt sufficiently informed about it. CONCLUSIONS: More than 50% of a large group of German IBD patients had used CAM. Prolonged or intensive steroid treatment, an academic education, active ways of coping, and a health-conscious life-style are associated with CAM use. Given the potential side effects and interactions, the treating physician should focus on thorough information about the benefits and limitations of conventional and complementary treatment options, especially for IBD patients who have received prolonged or intensive steroid treatment.

Häuser W, Dietz N, Steder-Neukamm U, Janke KH, Stallmach A. · Department of Internal Medicine I, Klinikum Saarbrücken, D-66119 Saarbrücken, Germany. · Inflamm Bowel Dis. · Pubmed #15475748 No free full text.

Abstract: BACKGROUND: In patients with ileal pouch anal anastomosis (IPAA) the influences of psychosocial variables and of extraintestinal manifestations of ulcerative colitis (UC) on health-related quality of life (HRQOL) have not been studied so far. METHODS: 61 patients with UC (age 52.7+/-13.9 years; 47% female) completed the German version of the Inflammatory Bowel Disease Questionnaire (IBDQ-D), the Short Form Health Survey (SF - 36), the German version of the Hospital Anxiety and Depression Scale (HADS-D) and the Giessener Symptom List (GBB 24). Independent of their current clinical activity 37 patients underwent endoscopies. Pouchitis was defined by the Pouch Disease Activity Score (PDAI) > or = 7. Where possible, IPAA-patients were compared with the data for the German general population and with a clinical sample of patients with UC and no IPAA. RESULTS: Patients with IPAA complained more about fatigue and arthralgia and a reduced physical and mental health (SF-36) than the German general population (P < 0.01). The IBDQ-total score could be predicted (adjusted R2 = 29.1, P < 0.01) by the number of operations due to IPAA-related complications (beta = -18.8) and HADS-D-Anxiety scores > or = 11 (beta = -29.1). The IBDQ-subscale score "Bowel" could be predicted (adjusted R2 = 13.7, P = 0.04) by PDAI > or = 7 (beta = -9.2) and the subscale score "Systemic" (adjusted R2 = 13.3, P = 0.04) by the number of extraintestinal manifestations (beta = -1.9). CONCLUSIONS: HRQOL of patients with UC and IPAA is determined not only by IPAA-related factors but also by anxiety and extraintestinal manifestations with associated musculoskeletal pain.

Häuser W, Dietz N, Grandt D, Steder-Neukamm U, Janke KH, Stein U, Stallmach A. · Medizinische Klinik I, Klinikum Saarbrücken, Saarbrücken, Germany. · Z Gastroenterol. · Pubmed #14963785 No free full text.

Abstract: BACKGROUND AND AIMS: The inflammatory bowel disease questionnaire (IBDQ) is the standard instrument for assessment of health-related quality of life (HRQOL) in patients with inflammatory bowel diseases. It has not been validated for patients with ileal pouch anal anastomosis (IPAA) and ulcerative colitis (UC). METHODS: To determine acceptance (percentage of completed items), reliability (Cronbach's alpha of the IBDQ-D subscales) and convergent validity (correlations of the IBDQ subscales with the questionnaires used for validation) 61 patients with UC (age 52.7 +/- 13.9 years; 47 % female, 53 % male) and IPAA completed the German (Competence Network IBD) version of the Inflammatory Bowel Disease Questionnaire (IBDQ-D), the Short Form Health Survey (SF-36) the Hospital Anxiety and Depression Scale German Version (HADS-D) and the Giessener Symptom List (GBB 24). Face validity was assessed by a physicians' and patients' panel. All 37 patients underwent endoscopy making it possible to differentiate between patients with and without pouchitis (discriminant validity). RESULTS: With 97.7 % completed items the acceptance was high. Cronbach's alpha value for the subscales ranged from 0.71 to 0.93. Missing items covering extraintestinal manifestations of IBD were criticized by patients. The correlation coefficients with comparable subscales of other instruments ranged between 0.41 and 0.76. Patients with clinical pouchitis scored significantly lower in all subscales than patients without pouchitis (p < 0.001). CONCLUSION: The IBDQ-D has good acceptance, reliability, convergent and discriminant validity, but limited face and construct validity in patients with IPAA and UC.

von Tirpitz C, Steder-Neukamm U, Glas K, Sander S, Ring C, Klaus J, Reinshagen M. · Abteilung Innere Medizin I, Universitätsklinikum Ulm. · Z Gastroenterol. · Pubmed #14661123 No free full text.

Abstract: INTRODUCTION: Osteoporosis is a frequent and clinically important complication in inflammatory bowel disease (IBD). Prevalence and risk factors have been examined in small numbers of patients. With a nationwide survey of members of the German Crohn's and Ulcerative Colitis Association (DCCV) we wanted to evaluate the situation in a larger group of patients. METHODS: Questionnaires were sent with the autumn issue of the members journal to approx. 14,620 affected members of the DCCV. Items covered osteoporosis, clinical symptoms, anamnesis and sociodemographic topics. Results are presented as descriptive analysis and in a logistic regression analysis of factors contributing to the osteoporosis risk. RESULTS: 2,536 questionnaires could be used (17.3 %). Mean age and distribution concerning diagnosis and gender were comparable to the DCCV members in total. The prevalence of pathologic bone density was 62.3 % in those 1,265 patients (50.1 %) who underwent bone densitometry in the course of their disease. The analysis led to the following possible risk factors: disease activity (high chronic activity or more than 1 acute flare annually vs. remission, p < 0.001), lifetime steroid dosage > 10 g (p = 0.002), Crohn's disease vs. ulcerative colitis (p = 0.02), multiple bowel resection (p = 0.032), age (p = 0.018) and low body mass index (p = 0.034). 83.4 % of the patients with pathologic bone density received specific therapy, but most of those (63.5 %) were solely substituted with calcium and vitamin D. CONCLUSION: This is the first study looking at epidemiology and risk factors of osteoporosis in a large study population of patients with inflammatory bowel disease. Although the prevalence may be overestimated due to selection bias in our study, osteoporosis is confirmed as a frequent and clinically relevant complication in IBD. Bone densitometry is recommended in those patients with one or more risk factors.

Janke KH, Raible A, Bauer M, Clemens P, Meisner C, Häuser W, Steder-Neukamm U, Henrich G, Herschbach P, Gregor M, Klump B. · Competence Network IBD--Core Facility Tübingen, Department of Internal Medicine I, University Hospital Tübingen, Otfried-Müller-Strasse 10, 72076 Tübingen, Germany. · Int J Colorectal Dis. · Pubmed #14586630 No free full text.

Abstract: BACKGROUND AND AIMS: When assessing quality of care the outcome in terms of quality of life (QOL) is of major significance. This study examined QOL in IBD outpatients and the contribution of individual expectations and various other factors including disease activity. PATIENTS AND METHODS: The study included 306 outpatients with Crohn's disease and 109 with ulcerative colitis (UC). General and health-related QOL was quantified using the instrument Questions on Life Satisfaction(Modules). Disease activity was assessed by a questionnaire. Data were compared with a normal population sample. RESULTS: Life satisfaction scores on general items and on health-related items were significantly lower than in a control sample (60.5+/-37.3 and 74.4+/-41.5, respectively) among both CD patients (54.3+/-33.2, 59.1+/-38.8) and UC patients (45.4+/-34.0, 52.1+/-40.7). Scores were significantly related to severity of disease activity. IBD patients attributed particular importance to health-related issues. CONCLUSION: Both health-related and general life satisfaction is compromised in IBD outpatients, and health-related topics have major impact. Not surprisingly, inflammatory activity compromises QOL, which underlines the importance of anti-inflammatory strategies. The importance attributed to health-related features is higher in IBD patients than in the normal population.