Aim Approximately 20%–30% of patients with ulcerative colitis (UC) will undergo surgery during their disease course, the vast majority being elective due to chronic refractory disease. The risks of elective surgery are reported variably. The aim of this systematic review and meta‐analysis is to summarize the outcomes after elective surgery for UC. Methods A systematic review was conducted that analysed studies reporting outcomes for elective surgery in the modern era (>2002). It was prospectively registered on the PROSPERO database (ref: CRD42018115513). Searches were performed of Embase and MEDLINE on 15 January 2019. Outcomes were split by operation performed. Primary outcome was quality of life; secondary outcomes were early, late and functional outcomes after surgery. Outcomes reported in five or more studies underwent a meta‐analysis of incidence using random effects. Heterogeneity is reported with I2, and publication bias was assessed using Doi plots and the Luis Furuya‐Kanamori index. Results A total of 34 studies were included (11 774 patients). Quality of life was reported in 12 studies, with variable and contrasting results. Thirteen outcomes (eight early surgical complications, five functional outcomes) were included in the formal meta‐analysis, all of which were outcomes for ileal pouch–anal anastomosis (IPAA). A further 71 outcomes were reported (50 IPAA, 21 end ileostomy). Only 14 of 84 outcomes received formal definitions, with high inter‐study variation of definitions. Conclusion Outcomes after elective surgery for UC are variably defined. This systematic review and meta‐analysis highlights the range of reported incidences and provides practical information that facilitates shared decision making in clinical practice.

IntroductionApproximately 20%–30% of patients with ulcerative colitis (UC) require surgery, the majority of these being elective due to chronic symptoms refractory to medical treatment. The decision for surgery is difficult and dependent on patient preferences. Current resources for patients considering surgery have been found not to meet minimum international standards. The overall aim of the ‘DISCUSS’ study is to develop and evaluate a new patient decision aid (PtDA) for patients considering surgery for UC created in line with international minimum standards.Methods and analysisThis is a prospective mixed-methods study of adults (18+ years) who are considering surgical intervention for UC across two regional centres in Yorkshire, UK. This study is in three stages. In stage 1 we will develop the PtDA and its content via systematic reviews and a patient questionnaire. In stage 2 we will assess the face validity of the PtDA using mixed-methods on key stakeholders using both semistructured interviews and questionnaires, following which the PtDA will be refined. In stage 3 we will assess the acceptability of using the PtDA in clinical practice. This will use a mixed-methods approach on clinicians and patients who are considering undergoing elective surgery. Questionnaires including the Preparation for Decision-Making Scale, a measure of anxiety and decisional conflict will be analysed at two timepoints using paired sample t-tests and CIs. Interviews with patients and clinicians will be analysed using thematic analysis.Ethics and disseminationResearch ethics approval from North East–Tyne & Wear South Research Ethics Committee (Ref: 19/NE/0073) and Health Research Authority approval (Ref: 257044) have been granted. Results will be published in open access peer-reviewed journals, presented in conferences and distributed through the Crohn’s and Colitis UK charity. External endorsement will be sought from the International Patient Decision Aid Standards Collaboration inventory of PtDAs.PROSPERO registration numberCRD42018115513, CRD42019126186, CRD42019125193.

Aim People living with ulcerative colitis (UC) have two broad treatment avenues, namely medical or surgical therapy. The choice between these can depend on patient preference as well as the receipt of relevant information. The aim of this study was to define the informational needs of patients with UC. Method A postal survey was designed to capture respondent demographics, treatment experienced within the previous 12 months and informational preferences by rating a long list of items. It was delivered through two hospitals that provide tertiary inflammatory bowel disease services. Descriptive analyses were performed to describe demographics and experiences. Principal component analysis was carried out using a varimax rotation to investigate informational needs. Results A total of 101 responses were returned (20.1% response rate). The median age of respondents was 45 years and the median time since diagnosis was 10 years. Control preferences skewed towards shared (42.6%) or patient‐led but clinician‐informed (35.6%). Decision regret was low for the population (median 12.5/100, range 0–100). Key informational needs related to medical therapy were benefits and risks of long‐term therapy, burden of hospital attendance, reproductive health, need for steroid treatment and impact on personal life. For surgery, these were stoma information, effect on daily life, effect on sexual and reproductive health, risks and benefits and disruption of life due to surgery. Conclusion This study has identified key areas for discussion when counselling patients about treatment decisions around medical therapy and surgery for UC.

Background The decision for ulcerative colitis (UC) patients to opt for elective surgery or continue medical treatment is dependent on patient preferences taking into account a range of factors. In addition to choosing between medical and surgical treatment, patients undergoing elective surgery are presented with a further decision regarding which operation to choose. The aim of this systematic review is to identify and understand what matters to UC patients when they are making these decisions. Methods Five electronic databases (PubMed, Scopus, CINAHL, Medline, and Embase) were searched for relevant literature up to 15 October 2020. Qualitative, quantitative and mixed-methods studies were included in this review. Studies reporting on what was important to UC patients (over 16 years of age) when they make treatment decisions were included. The Mixed Methods Appraisal Tool was used to assess the quality of the papers. Thematic analysis was used to analyse the data. Results The searches identified 6,917 papers and a final 19 (eight quantitative, seven qualitative, four mixed methods) papers were included. All studies were published since 2007 and included a total of 3,328 participants from nine countries. Five overarching themes (and their associated 20 sub-themes) were generated to describe the factors reported as important to UC patients in making treatment decisions. These were: 1. Information provision (information content, knowledge about their illness, quality of information); 2. Impact of the treatment upon daily life (controlling physical symptoms, quality of life); 3. Levels of risk (trade-off, high risk, concern and worry); 4. Burden of treatment (the need to see benefits of medication, route and size of medication, side effects, dosing frequency, costs, effort of being the patient, adherence to medication, surgery concerns, timing of surgery); and 5. Patient-clinician relationship (shared decision-making, communication, mismatch between what clinicians and patients consider to be important). Conclusion Communication between patients and their IBD teams should take into account the range of factors that influence their treatment decision making. Decision support interventions that incorporate such factors may better support the patient-clinician relationship and improve knowledge of treatment options and how these impact on what matters to them. Future studies are needed to determine which factors identified in this review are dominant.