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Methods: This qualitative study using narrative inquiry is part of a larger multi-center study of clinical queries and quality of life in patients with ARM. The guided interview focused on analysis of sexual function.




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Results: 55 adult patients with ARM (23 females, 32 males, median age 23 years, range from 18 to 56 years) were investigated via standardized case-report forms comprising interview, analysis of medical data and personal questionnaires. In the female patients, 8 (35 %) of them lived alone and 15 (65 %) had sexual intercourse. In the male patients, the majority of 20 (69 %) patients lived alone and 13 (45 %) had sexual intercourse. 6 of the females got pregnant, 5 got 2 or more children. 3 of the men induced 2 or more pregnancies and fathered children.


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Fatigue has only recently gained the attention of gastroenterologists in quiescent inflammatory bowel disease (IBD). In a Dutch study more than 40% of IBD-patients in remission suffered from fatigue. 40% of the patients in remission suffered from a higher level of fatigue compared to age and sex matched healthy controls. No correlations could be found between fatigue, basal cortisol levels or other laboratory parameters. A correlation between fatigue and an impaired health related quality of life (HRQOL) was noted. The impact of fatigue on the social domains of HRQOL compared to other IBD-symptoms such as abdominal pain and diarrhea was not investigated. Patients with an ileostomy/ colostomy or an ileal pouch-anal anastomosis (IPAA) were not included in the study. The authors concluded that further research into the pathogenesis of fatigue in IBD is warranted [8].


The study was a secondary analysis of data on HRQOL gathered in studies validating the German version of the Inflammatory Bowel Disease Questionnaire (IBDQ) in patients with ulcerative colitis and ileal pouch-anal anastomosis (IPAA) and restorative proctocolectomy [9] and the German version of the Short - IBDQ (SIBDQ-D) in patients with UC and Crohn's disease (CD) [10]. Because in the study of Minderhoud and coworkers CD- and UC-patients differed in their levels of fatigue (8) we analysed only data of the UC-patients of the SIBDQ-D sample.


The subscale "Fatigue" of the Short Form Giessen Subjective Complaints List GSCL was used to measure fatigue. With 24 items on a 5-point Likert scale ranging from 0 (no suffering from this symptom) to 4 (severe suffering from this symptom) bodily symptoms can be assessed in 4 subscales (fatigue, dyspeptic symptoms, musculoskeletal symptoms, cardio respiratory symptoms and a total score). Within the subscales scores range from 0-24 and in the total score from 0-144 with 0 indicating no suffering from bodily symptoms and 24, 144 respectively severe suffering from bodily symptoms. The GSCL has been developed and validated in German and proved to be reliable and valid [13]. We compared the fatigue-scores of the GSCL in the study sample with a representative sample (as to the distribution of age, sex and education) of the German population (N = 1943 people) which was recruited 1994 by an independent service of surveys, methods and analyses [13].To allow comparisons with the study of Minderhoud and coworkers [8] we defined (exceptional) fatigue by a GSCL- fatigue score >10 (95 percentile in the representative sample of the German population).


In patients with IPAA stepwise multiple regression analyses with p in and out = 0.05 were performed to assess the impact of fatigue (IBDQ Item 2) compared to other intestinal symptoms of IBD (Number of stools -IBDQ Item 1; Liquidity of stools - IBDQ Item 5; Abdominal cramps - IBDQ Item 9; Abdominal pain - IBDQ Item 13; Passing gas - IBDQ Item 17; Bloating - IBDQ Item 20; Rectal bleeding - IBDQ Item 22; Going to bathroom despite empty bowels - IBDQ Item 24; Soiling underwear - IBDQ Item 26) in the IBDQ subscales "Social" and the SF-36 subscales "Physical Functioning", "Physical Role Limitation" and "Social Functioning". In patients without IPAA the predictive value of fatigue (SIBDQ Item 1) compared to other intestinal symptoms of IBD (Abdominal pain - SIBDQ Item 4; Passing gas - SIBDQ Item 6; Going to bathroom despite empty bowels - SIBDQ Item 9) was tested with the SIBDQ subscale "Social" (SIBDQ Items 2 and 3) as dependent variables.


Stepwise multiple regression analyses with p in and out = 0.05 were performed to identify variables predicting high scores on the subscale "Fatigue" of the GSCL. The following seven independent variables were entered into regression analysis for IPAA-patients:


In contrast to findings in the general German population [8], [13], age and sex had no influence on fatigue in our study. An age-related increase of fatigue in the general population starts with the age of 40 years and increases every decade [13]. Because most of our patients were between 30 and 50 years of age we might have missed to demonstrate an effect of age on fatigue in UC-patients. We did not find any differences between male and female patients neither in the level of fatigue nor in the level of depressiveness (data not presented). We were able to confirm our hypothesis on the predictive value of depressiveness on fatigue only in UC-patients without IPAA. Perhaps this finding is due to the fact that the rate of IPAA-patients taking psychopharmacological agents (35.3%) was higher than the one in the group without IPAA (6.5%), with a possible effect of a reduction of clinical depressiveness in our IPAA-patients. Yet we did not differentiate in the questionnaire or in the clinical interview between different types of psychopharmacological agents. The Swedish study also found depressiveness as a predictor of fatigue in patients with primary sclerosing cholangitis with and without IBD [25]. Only in IPAA-patients disease activity could significantly predict fatigue. This could be due to the different weight of subjectively experienced symptoms in the CAI and PDAI. One third of the score of the PDAI is defined by (four) rather subjective symptoms [11] whereas the CAI is composed by one such symptom and six objective findings [12]. If in the IPAA-patients only the endoscopic or histological scores of the PDAI would be entered into multiple regression analyses instead of the total score, we would have failed to demonstrate any predictive value of the PDAI for the subscales of the IBDQ-D. Therefore our data confirm the findings of Minderhoud and coworkers [8] that fatigue in UC-patients is (mainly) independent from objective disease measures in quiescent disease. Our findings lead to the assumption that this is true also for patients with mild disease activity. 041b061a72


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