Development and evaluation of a patient decision aid for patients considering ongoing medical or surgical treatment options for ulcerative colitis using a mixed-methods approach : protocol for DISCUSS study

Introduction: Approximately 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 analysis: This 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 dissemination: Research 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

Patients’ perspectives on the medical primary-secondary care interface : systematic review and synthesis of qualitative research

Funding NHS Highland Research, Development & Innovation Department, Aberdeen University, and Stirling University provided funds to meet publication costs.Peer reviewedPublisher PD

Dying Tt Save Your Colon? Changing the Way We Look at Ulcerative Colitis

Treatment options for mesalamine-refractory ulcerative colitis (UC) include chronic immunosuppressive medications or colectomy surgery. Current treatment paradigms presume the patients\u27 foremost desire is to avoid surgery and therefore view surgery as a consequence of medication failure. However, immunosuppressive therapy may not be ideal for all patients due to unclear durable efficacy and potential lethal serious adverse events (SAEs). We sought to quantify UC patients\u27 risk tolerance of chronic immunosuppression to avoid colectomy. We first conducted a meta-analysis of all-cause and cause-specific mortality in both Crohn\u27s disease (CD) and UC, and examined the effect of study design on this outcome. We found elevated all-cause and cause-specific mortality in both UC and CD including colorectal-, pulmonary- and non-alcoholic liver disease-related relative mortality. We further found little evidence that study design impacted all-cause relative mortality summary estimates. We next conducted a study examining the reliability of the 6-Point Mayo score, a simple two-item non-invasive non-physician driven index, for measuring UC disease activity. We found the 6-Point Mayo to strongly correlate with more extensive disease assessment tools, with a similar sensitivity, specificity and ROC area under the curve for patient-defined clinical remission. With these insights, we conducted a discrete choice experiment to quantify the UC patients\u27 mean maximum acceptable risk for life-threatening SAEs associated with immunosuppressant therapy to avoid colectomy surgery with various outcomes. We found that UC patient tolerance for medical and surgical risks do not conform to conventional preference-elicitation methodology assumptions. UC patients were willing to accept very high levels of fatal SAEs to avoid an ostomy. However, if a durable medication-induced remission could not be achieved, patients were equally satisfied with J-pouch surgery. Several important clinical phenotypes impacted patient risk tolerances. This is the first empirical demonstration that UC patients view a well-functioning J-pouch as equivalent to mild clinical disease. It further demonstrates that patients value medication efficacy and suggests that clinical remission, rather than response, be the preferred outcome for therapy trials and treatment algorithms. Our findings underline the need for rigorous methodologies to accurately measure patient-preferences; and suggest potential avenues to enhance UC patient autonomy and facilitate shared decision-making

SL Nutrition: A Private Practice Specializing in Gastrointestinal health and Food Intolerances & Allergies

SL Nutrition is a private nutrition counseling practice located in Durham, NC specializing in GI health. As the sole proprietor, I will specifically target individuals with chronic GI disorders and food intolerances and allergies. Through nutrition education, collaborative, client-centered counseling, and delivery of nutrition recommendations and interventions, I will help clients manage their condition, reduce symptoms, and address nutrition concerns. The practice will support a hands-on model of learning; I will offer dietitian-led grocery store trips, cooking instruction, and kitchen and pantry reorganizations. I will also offer group classes to support social connectivity and community among clients. Although the practice’s primary focus is nutrition counseling, it is inspired by a commitment to contributing to community engagement and increasing the accessibility of nutrition therapy and education.Master of Public Healt