Is QUOTE-IBD a valid questionnaire for measurement of quality of care in IBD? A validation study of the Swedish version.

Background: Quality of care has gained increased attention in IBD. The questionnaire Quality of Care Through the Patient's Eyes - Inflammatory Bowel Disease (QUOTE-IBD) was the first published validated IBD-specific quality of care questionnaire. The aim of this study was to validate the Swedish version of the QUOTE-IBD.Methods: Adult outpatients (n = 400) at a gastroenterology clinic in the south-east of Sweden were asked to fill in the questionnaire. For evaluation of construct validity, patients also responded to one global item for each health care dimension in the QUOTE-IBD, as well as for their overall experience of quality of health care.Results: All quality of care dimensions (QI) correlated significantly (p < .05) with their respective global dimensional item (r = 0.016-0.43), except for accommodation (r = -0.02. Test-retest (n = 32) gave significant results for all the dimensions r = 0.31-0.80 (p < .05), except for accommodation (-0.15, p = ns).Conclusions: The construct validity of the Swedish version of QUOTE-IBD is moderate. This indicates that the QUOTE-IBD may not fully cover the health care aspects important to patients. The high number of item non-response for Performance may be related to the questions being too specific, which may also contribute to the moderate level of construct validity. The reliability is moderate and the internal consistency is good.

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 patient's 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 patient's symptoms and situation.

Critical Situations in Daily Life as Experienced by Patients With Inflammatory Bowel Disease.

Crohn disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic and have a fluctuating clinical course that impacts daily life. Daily life with a chronic disease involves thinking and worrying about the limitations that chronic disease causes. Knowledge about how patients who suffer from IBD manage critical incidents in daily life is lacking. The aim of the study was to describe how patients living with IBD experience critical incidents in daily life in relation to their disease and symptoms. Thirty adult patients were interviewed focusing on critical incidents in daily life. Data were analyzed using the critical incident technique. The study comprised 224 critical incidents and was grouped into 21 subcategories and 5 categories: losing bowel control, having a body that smells, being unable to meet own and others' expectations, not being believed or seen, and experiencing frustration due to side effects and ineffective treatment. These categories formed one main area describing the overall result "The bowels rule life." The uncertain nature of IBD created critical incidents in which the bowel ruled life, causing patients to avoid social interaction. It also placed considerable demands on the family and sometimes had a negative effect on the afflicted person's career.

Patients' perspective of factors influencing quality of life while living with Crohn disease.

Crohn disease is a chronic inflammatory bowel disease of unknown etiology. The chronic, relapsing nature of Crohn disease produces physical, psychological, and social stress. The disease occurs early in life, and the effects of Crohn disease on daily life are associated with symptom burden; thus, managing their disease and coping with its impact is a lifelong process for sufferers. This study was undertaken to identify and describe the meaning of quality of life in patients with Crohn disease. Using a grounded theory methodology, 11 interviews were performed with 6 men and 5 women, 29-83 years of age, all suffering from Crohn disease. The experience of quality of life was associated with limitations in daily activity, the major theme that emerged from the analysis. Quality of life varied depending on how the patient managed limitations related to the symptoms of the disease. The categories of self-image, confirmatory relations, powerlessness, attitude toward life, and sense of well-being were conceptualized as the dominant themes derived from the data. When caring for these patients, it is important to identify limitations and provide support so that patients are able to maintain a daily life that can be perceived as normal and routine.