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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
  1. Daniel Mark Baker1,
  2. Matthew James Lee2,
  3. Anne-Mairead Folan3,
  4. Sue Blackwell4,
  5. Kerry Robinson5,
  6. Rebecca Wootton6,
  7. Shaji Sebastian7,
  8. Steven R Brown2,
  9. Georgina Louise Jones8,
  10. Alan J Lobo9
  1. 1Leicester Medical School, Leicester, UK
  2. 2Department of General Surgery, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  3. 3Department of Psychology, Leeds Beckett University, Leeds, West Yorkshire, UK
  4. 4ACPGBI Patient Liaison Group, London, UK
  5. 5Inflammatory Bowel Disease Nurse Specialist, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  6. 6Stoma Care Specialist Nurse, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  7. 7Department of Gastroenterology, Hull and East Yorkshire Hospitals NHS Trust, Hull, Kingston upon Hull, UK
  8. 8Deparment of Psychology, Leeds Beckett University Faculty of Health and Social Sciences, Leeds, UK
  9. 9Gastroenterology Unit, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  1. Correspondence to Professor Alan J Lobo; alan.lobo{at}


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.

PROSPERO registration number CRD42018115513, CRD42019126186, CRD42019125193.

  • ulcerative colitis
  • decision making
  • surgery

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  • Contributors AJL is the chief investigator and secured grant funding with assistance from DMB, MJL, GLJ and SRB in formulating the protocol and attending grant interviews. AJL, DMB, MJL, GLJ, SRB, SS and SB provided intellectual input into the protocol for the grant application. AJL, DMB, MJL, GLJ, SRB, SS, SB, AMF, KR and RW provided intellectual input and study design for the final protocol for the study.

  • Funding This work was funded by the Crohn’s and Colitis UK ‘Living with IBD’ research award for 2018. This was awarded to the research group, with AJL as the principal investigator.

  • Competing interests AJL is a consultant, advisory board member or received lecture fees for MSD, Janssen, Pfizer, Takeda Pharma, AbbVie, Dr Falk, Shield Pharmaceuticals and Vifor Pharma. All other authors have no conflicts of interest to declare.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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