What matters to Ulcerative Colitis patients when they make treatment decisions? A systematic review

Abstract 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.