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.

Background and aims: Quality of care is important in lifelong illnesses such as inflammatory bowel disease (IBD). Valid, reliable and short questionnaires to measure quality of care among persons with IBD are needed. The aim of this study was to develop a patient-derived questionnaire measuring quality of care in persons with IBD. Methods and results: The development of the questionnaire The Quality of Care -Questionnaire (QoC-Q) was based on a literature review of studies measuring quality of care, and the results of two qualitative studies aiming to identify the knowledge need and perception of health care among persons with IBD. Further development and evaluation was done by focus groups, individual testing and cognitive interviews with persons with IBD, as well as evaluation by a group of professionals. After the development, the questionnaire was tested for validity and test–retest reliability in 294 persons with IBD. Conclusions: The QoC-Q is showing promising validity and reliability for measuring the subjective perception of quality of care. Further testing in clinical practice is suggested to assess if the QoC-Q can be used to evaluate care and areas of improvement in health care for persons living with IBD.

Patient-reported outcome measures [PROMs] aim to measure patients’ perception of how their disorder influences everyday functioning. The objective of this study was to develop a PROM to assess disease activity in microscopic colitis [MC] fulfilling the requirements of the Food and Drug Administration [FDA]. The European Microscopic Colitis Activity Index [E-MCAI] was developed in four steps. [1] A list of symptoms associated with active MC was created by a group of experts in the field. [2] Content validity of the symptoms was performed by experts [n = 14] and patients [n = 79] using the Content Validity Index. [3] Questions and response alternatives were created for each symptom, and validity of the E-MCAI was evaluated with cognitive interviews with patients [n = 7] and by the experts. [4] A pilot postal survey was performed to ensure usability. Seven of the symptoms related to active MC fulfilled the criteria for content validity and were included in the E-MCAI: stool consistency, stool frequency, stools at night, feel a need to pass more stools shortly after a bowel movement, urgent need to empty the bowel, leakage of stool and abdominal pain. The development and validation process resulted in the current version of the E-MCAI consisting of six questions related to MC. The E-MCAI was developed using the methods advocated by the FDA. The evaluation indicates good content validity. Further evaluation will be performed to achieve construct validity, reliability and responsiveness in future cross-sectional and longitudinal studies.

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.

Background: Inflammatory bowel disease (IBD), including Crohn’s disease, ulcerative colitis, and IBD unclassified, is a chronic condition that can affect daily life. Maintenance therapy is essential, yet non-adherence remains common and may compromise treatment outcomes. This study aimed to explore how adults with IBD understand, negotiate, and enact medication adherence as part of everyday self-care. Methods: Inductive, qualitative, semi-structured interviews were conducted with adults diagnosed with IBD at a gastroenterology clinic in Sweden. Interviews were audio-recorded, transcribed verbatim, and analysed using content analysis. Results: Fifteen interviews were conducted (9 ulcerative colitis, 5 Crohn’s disease, 1 IBD-U). Three main categories were identified: illness perceptions, healthcare perceptions, and treatment perceptions. Medication adherence was described as an ongoing process shaped by how participants interpreted symptoms, adapted to life with IBD, and evaluated the need for treatment. Participants weighed the perceived benefits of medication against concerns about adverse effects and often combined medical treatment with lifestyle-based strategies for symptom management. Trusting communication, continuity of care, and access to relevant information facilitate adherence, while practical treatment burdens and uncertainty regarding disease activity undermined adherence. Conclusion: Medication adherence in IBD is embedded within everyday self-care and influenced by illness perceptions, treatment beliefs, practical challenges, and healthcare encounters. Clinicians should acknowledge patients’ concerns, dietary practices, and lifestyle strategies alongside medical treatment. Person-centred communication, clear treatment goals, and shared decision-making may support adherence and strengthen self-care.

Background and Aims: The purpose of restorative surgery after colectomy is to improve quality of life. Still, little is known about patient perspectives. We explored factors influencing ulcerative colitis patients' choice between restorative procedures and stoma, and their experiences of associated healthcare. Methods: Semi‐structured interviews were conducted with 21 ulcerative colitis patients subjected to subtotal colectomy and who had either chosen restorative surgery or a permanent stoma. Participants were recruited from two hospitals within the CRUISE trial. Interviews were conducted in person or digitally and analyzed using conventional content analysis as described by Elo and Kyngäs. The COREQ checklist guided reporting. Data collection continued until saturation was reached. Results: Twenty‐one participants (14 men, 7 women; median age 34) were interviewed 43 months post‐colectomy. Analysis revealed three main categories and seven subcategories: (1) decisive factors in surgical choice, (2) shared decision‐making, and (3) facilitating factors in patients' choice of restorative surgery or stoma. Participants emphasized striving for normality and high quality of life, regardless of surgical choice. Informed decision‐making and active involvement were central themes. Additionally, the attitude of healthcare professionals, continuity of care, and support structures significantly shaped patients' perceptions and choices. The findings highlight the complex interplay of physical, psychosocial, and systemic factors influencing surgical decisions. Conclusions: This study explores the experiences of ulcerative colitis patients after colectomy. Key factors influencing treatment satisfaction and QoL include adequate information, shared decision‐making, and the pursuit of normality. A patient‐centred approach, focusing on informed and individualized decisions, could improve both physical and emotional outcomes in surgical care.