Self-Care Among Patients with Inflammatory Bowel Disease: An Interview Study

Inflammatory bowel disease (IBD) is a chronic disease of unknown etiology. The disease occurs early in life and the burden of symptoms is significant. Patients need to perform self-care to handle their symptoms, but knowledge about what kind of self-care patients do is limited and these individuals need to learn how to manage the symptoms that arise. The aim of this study was to explore self-care among patients with IBD. Twenty adult patients with IBD, 25–66 years of age, were interviewed. Data were analyzed by performing a qualitative content analysis. Four categories with 10 subcategories emerged from the analysis of the interviews. The self-care patients perform consists of symptom recognition (subcategories: physiological sensations and psychological sensations), handling of symptoms (subcategories: adapting the diet, using medical treatment, stress management, and using complementary alternative medicine), planning life (subcategories: planning for when to do activities and when to refrain from activities), and seeking new options (subcategories: seeking knowledge and personal contacts). Self-care consists of symptom recognition, handling life through planning, and accommodating the existing situation with the ultimate goal of maintaining well-being. Being one step ahead facilitates living with IBD. A decision to actively participate in care of a chronic illness is a prerequisite for self-care. Healthcare professionals must consider patients\u27 potential for and desire for self-care when giving advice on self-care activities. Doing so may help people better cope with IBD

Self-care among patients with inflammatory bowel disease

Inflammatory bowel disease (IBD) is a chronic disease of unknown etiology. The disease occurs early in life and the burden of symptoms is significant. Patients need to perform self-care to handle their symptoms, but knowledge about what kind of self-care patients do is limited and these individuals need to learn how to manage the symptoms that arise. The aim of this study was to explore self-care among patients with IBD. Twenty adult patients with IBD, 25–66 years of age, were interviewed. Data were analyzed by performing a qualitative content analysis. Four categories with 10 subcategories emerged from the analysis of the interviews. The self-care patients perform consists of symptom recognition (subcategories: physiological sensations and psychological sensations), handling of symptoms (subcategories: adapting the diet, using medical treatment, stress management, and using complementary alternative medicine), planning life (subcategories: planning for when to do activities and when to refrain from activities), and seeking new options (subcategories: seeking knowledge and personal contacts). Self-care consists of symptom recognition, handling life through planning, and accommodating the existing situation with the ultimate goal of maintaining well-being. Being one step ahead facilitates living with IBD. A decision to actively participate in care of a chronic illness is a prerequisite for self-care. Healthcare professionals must consider patients' potential for and desire for self-care when giving advice on self-care activities. Doing so may help people better cope with IBD

Development of a Self-Care Questionnaire for Clinical Assessment of Self-care in Patients with Inflammatory Bowel Disease: A Psychometric Evaluation

Background: Patients with inflammatory bowel disease have lifelong needs to learn how to manage their symptoms and life situation. The range of actions that patients take in order to manage daily life and maintain health is referred to as self-care. Assessment of self-care inpatients with inflammatory bowel disease could allow targeted support and education by health care professionals.There are no existing measures assessing self-care in patients with inflammatory bowel disease. Objectives: The aim was to develop and evaluate the self-care questionnaire for assessment of self-care among patients with inflammatory bowel disease. Methods: Qualitative and quantitative methods were used to develop inflammatory bowel disease self-care questionnaire. The development and evaluation process was performed in three phases: (1) item generation based on interviews with patients with inflammatory bowel disease(n=20), (2) content validation in a panel of experts (n=6) and patients(n=100) assessed with the content validity index, cognitive interviews and quantifying and ranking the items to determine the usability of the questionnaire, and (3) final evaluation through a pilot study (n=93) with test-retest evaluation (n=50). An expert review group of three nurses and one physician continuously discussed the result during the development process. Results: A total of 91 patients with Crohn\u27s disease and 102 with ulcerative colitis participated. The final self-care questionnaire consists of 22 items. Assessment of content validity indicated that the items were adequate and easy to understand. Test-retest reliability was confirmed with intraclass correlations above 0.6 after a three week interval, for all items except one. Conclusion: An inflammatory bowel disease-specific self-care questionnaire was developed using structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess the ability of patients with inflammatory bowel disease to perform routine self-care

Therapeutic drug monitoring in inflammatory bowel disease : implementation, utilization, and barriers in clinical practice in Scandinavia

Background and aims Therapeutic drug monitoring (TDM) may optimize biologic and thiopurine therapies in inflammatory bowel disease (IBD). The study aimed to investigate implementation and utilization of TDM in Scandinavia. Methods A web-based questionnaire on the use of TDM was distributed to Scandinavian gastroenterologists via the national societies. Results In total, 297 IBD physicians prescribing biologic therapies, equally distributed between community and university hospitals, were included (response rate 42%) (Norway 118 (40%), Denmark 86 (29%), Sweden 50 (17%), Finland 33 (11%), Iceland 10 (3%)). Overall, TDM was applied during biologic therapies by 87%, and for TNF-inhibitors >90%. Among the users, reactive and proactive TDM were utilized by 90% and 63%, respectively. Danish physicians were significantly less inclined to use TDM compared to other Scandinavian countries; (58% vs 98%); OR 0.03 [0.01-0.09], p 10 IBD patients/week (p = 0.005). TDM scenarios were interpreted in accord with available evidence but with discrepancies for proactive TDM. The main barriers to TDM were lack of guidelines (51%) and time lag between sampling and results (49%). TDM of thiopurines was routinely used by 87%. Conclusion TDM of biologic and thiopurine therapies has been broadly implemented into clinical practice in Scandinavia. However, physicians call for TDM guidelines detailing indications and interpretations of test results along with improved test response times.Peer reviewe

http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-97578 ORIGINAL ARTICLE

Frisman, What do patients need to know? Living with inflammatory bowel disease, 2013

Microscopic colitis: Struggling with an invisible, disabling disease

Background and aims Microscopic colitis causes chronic or recurrent nonbloody, watery diarrhoea, which is associated with urgency, faecal incontinence and abdominal pain. The patients health-related quality of life is often impaired. In microscopic colitis, health-related quality of life has been studied using questionnaires originally constructed and validated for patients with inflammatory bowel disease. The aim of this study was to explore the impact of microscopic colitis on everyday life. Methods and results Inductive, qualitative, semi-structured interviews were performed with 15 persons suffering from microscopic colitis. Content analysis was used to explore the impact of the condition on everyday life. The study followed the consolidated criteria for reporting qualitative research. The qualitative inductive content analysis generated one theme and five subthemes. The theme was "struggling with an invisible, disabling disease." The five subthemes were as follows: physical experience of bowel function; associated symptoms affecting quality of life; impact of the disease on everyday life; disease-related worry; and strategies for managing everyday life. Conclusions The semi-structured interviews with persons suffering from microscopic colitis provided a wide spectrum of answers to the question of how everyday life is affected. Microscopic colitis can be a disabling life experience, and patients develop different strategies to adapt, cope and regain their previous performance level. Relevance to clinical practice There are new and interesting findings in our study that everyday life still remains affected even when patients are in remission. These findings have relevance in clinical practice and may create a better understanding of the patients symptoms and situation

Contractile properties of ureters from rats with infravesical urinary outlet obstruction

Mechanical properties of ureters from rats with infravesical urinary outflow obstruction were studied in vitro. Urinary outflow obstruction was created by partial ligation of the urethra in female rats. After 10 days a marked hypertrophy of the urinary bladder and a dilatation of the ureters were observed. Proximal and distal segments of the ureters from these animals were isolated and mounted in a wire myograph for force registration. Comparisons were made with ureters from control rats. The ureters from the rats with urinary outflow obstruction exhibited a large increase in lumen diameter and an unchanged thickness of the muscle layer. These data suggest that the dilatation of the ureters is associated with growth of the smooth muscle in the wall. All ureter preparations were relaxed in normal physiological salt solution. When the extracellular K+ concentration was increased to 20 mM the dilated ureters became spontaneously active. At [K+] in the range 20-40 mM in the presence of noradrenaline (10(-5) M) all ureters exhibited high-frequency spontaneous contractions. The dilated ureters had a lower frequency of spontaneous contractions and a higher force. The results show a pronounced remodelling of the ureter wall following infravesical outlet obstruction. The structural changes were associated with alterations in the contraction pattern of the preparations, most probably reflecting changes in the excitation-contraction coupling of the growing cells

Well-being and dietary adherence in patients with coeliac disease depending on follow-up

Objective It is not clear how follow-up of coeliac disease should be optimally organised. In Malmo, Sweden, patients are followed up by general practitioners (GP), but in Linkoping by gastroenterologists (GE). The aim of this study was to investigate if there were any differences in well-being and dietary adherence depending on type of follow-up. Methods All adult patients with newly diagnosed biopsy-verified coeliac disease in the cities between 2010 and 2014 were offered to participate. Data was retrieved comprising demography, laboratory analyses, questionnaires (Gastrointestinal Symptoms Rating Scale, Short Health Scale, Multidimensional Fatigue Inventory, Psychological General Well-being Index and Short Form 36) and follow-up. Results In the GP cohort 39/73 patients and in the GE cohort 58/121 agreed to participate (mean age 43 and 44 years, 69 and 60% women, respectively). A follow-up to a dietician was carried out in 31% and 93% of patients, respectively (p < .001). In the GP group 28% had eaten gluten-containing food during the last 4 weeks compared to 9% in the GE group (p = .01). Despite this, no differences could be seen in vitamin or mineral levels. The questionnaires did not indicate any major discrepancies in subjective health. Conclusion Irrespective of the design of the follow-up physical and mental well-being were comparable. Dietary adherence was not quite as good in the GP group but follow-up in a primary care setting can still be a suitable and equivalent alternative. However, it is crucial that the dietary counselling is structured in a way that ensures dietary adherence