{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T09:13:37Z","timestamp":1775034817207,"version":"3.50.1"},"reference-count":47,"publisher":"BMJ","issue":"1","license":[{"start":{"date-parts":[[2020,1,14]],"date-time":"2020-01-14T00:00:00Z","timestamp":1578960000000},"content-version":"unspecified","delay-in-days":13,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100003522","name":"Crohn's and Colitis UK","doi-asserted-by":"publisher","award":["Living with IBD award 2018"],"award-info":[{"award-number":["Living with IBD award 2018"]}],"id":[{"id":"10.13039\/501100003522","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2019,11,20]]},"published-print":{"date-parts":[[2020,1]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Approximately 20%\u201330% 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 \u2018DISCUSS\u2019 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>Research ethics approval from North East\u2013Tyne &amp; 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\u2019s and Colitis UK charity. External endorsement will be sought from the International Patient Decision Aid Standards Collaboration inventory of PtDAs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>PROSPERO registration number<\/jats:title>\n                    <jats:p>CRD42018115513, CRD42019126186, CRD42019125193.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2019-031845","type":"journal-article","created":{"date-parts":[[2020,1,15]],"date-time":"2020-01-15T05:04:30Z","timestamp":1579064670000},"page":"e031845","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":9,"title":["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"],"prefix":"10.1136","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3708-790X","authenticated-orcid":false,"given":"Daniel Mark","family":"Baker","sequence":"first","affiliation":[{"name":"Leicester Medical School, Leicester, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9971-1635","authenticated-orcid":false,"given":"Matthew James","family":"Lee","sequence":"additional","affiliation":[{"name":"Department of General Surgery, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne-Mairead","family":"Folan","sequence":"additional","affiliation":[{"name":"Department of Psychology, Leeds Beckett University, Leeds, West Yorkshire, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sue","family":"Blackwell","sequence":"additional","affiliation":[{"name":"ACPGBI Patient Liaison Group, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kerry","family":"Robinson","sequence":"additional","affiliation":[{"name":"Inflammatory Bowel Disease Nurse Specialist, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca","family":"Wootton","sequence":"additional","affiliation":[{"name":"Stoma Care Specialist Nurse, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shaji","family":"Sebastian","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology, Hull and East Yorkshire Hospitals NHS Trust, Hull, Kingston upon Hull, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Steven R","family":"Brown","sequence":"additional","affiliation":[{"name":"Department of General Surgery, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Georgina Louise","family":"Jones","sequence":"additional","affiliation":[{"name":"Deparment of Psychology, Leeds Beckett University Faculty of Health and Social Sciences, Leeds, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alan J","family":"Lobo","sequence":"additional","affiliation":[{"name":"Gastroenterology Unit, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2020,1,14]]},"reference":[{"key":"2025121403573288000_10.1.e031845.1","doi-asserted-by":"crossref","first-page":"1606","DOI":"10.1016\/S0140-6736(12)60150-0","article-title":"Ulcerative colitis","volume":"380","author":"Ord\u00e1s","year":"2012","journal-title":"The Lancet"},{"key":"2025121403573288000_10.1.e031845.2","doi-asserted-by":"crossref","unstructured":"Sutherland L , Macdonald JK . Oral 5-aminosalicylic acid for induction of remission in ulcerative colitis. Cochrane Database Syst Rev 2006:CD000543.doi:10.1002\/14651858.CD000543.pub2","DOI":"10.1002\/14651858.CD000543.pub2"},{"key":"2025121403573288000_10.1.e031845.3","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa050516"},{"key":"2025121403573288000_10.1.e031845.4","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2011.10.032"},{"key":"2025121403573288000_10.1.e031845.5","doi-asserted-by":"crossref","first-page":"1723","DOI":"10.1056\/NEJMoa1606910","article-title":"Tofacitinib as induction and maintenance therapy for ulcerative colitis","volume":"376","author":"Sandborn","year":"2017","journal-title":"N Engl J Med"},{"key":"2025121403573288000_10.1.e031845.6","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2011.01.055"},{"key":"2025121403573288000_10.1.e031845.7","doi-asserted-by":"crossref","first-page":"1211","DOI":"10.1016\/j.suc.2015.07.003","article-title":"Indications and options for surgery in ulcerative colitis","volume":"95","author":"Bohl","year":"2015","journal-title":"Surg Clin North Am"},{"key":"2025121403573288000_10.1.e031845.8","doi-asserted-by":"publisher","DOI":"10.1136\/gutjnl-2011-300988"},{"key":"2025121403573288000_10.1.e031845.9","doi-asserted-by":"crossref","first-page":"807","DOI":"10.1111\/apt.13763","article-title":"Systematic review: outcomes and post-operative complications following colectomy for ulcerative colitis","volume":"44","author":"Peyrin-Biroulet","year":"2016","journal-title":"Aliment Pharmacol Ther"},{"key":"2025121403573288000_10.1.e031845.10","doi-asserted-by":"crossref","first-page":"1566","DOI":"10.1016\/j.ijnurstu.2013.04.003","article-title":"Surgery in young adults with inflammatory bowel disease: a narrative account","volume":"50","author":"Allison","year":"2013","journal-title":"Int J Nurs Stud"},{"key":"2025121403573288000_10.1.e031845.11","first-page":"1","article-title":"Parastomal hernia \u2013 current knowledge and treatment","volume":"13","author":"Styli\u0144ski","year":"2018","journal-title":"Wideochir Inne Tech Maloinwazyjne"},{"key":"2025121403573288000_10.1.e031845.12","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-012-2077-6"},{"key":"2025121403573288000_10.1.e031845.13","unstructured":"sitecore\\ . Consent: Supported Decision-Making - a good practice guide \u2014 Royal College of Surgeons [Internet]. Royal College of Surgeons. Available: https:\/\/www.rcseng.ac.uk\/library-and-publications\/rcs-publications\/docs\/consent-good-practice-guide\/ [Accessed cited 7 Nov 2018]."},{"key":"2025121403573288000_10.1.e031845.14","unstructured":"Ulcerative colitis: management | Guidance and guidelines | NICE. Available: https:\/\/www.nice.org.uk\/guidance\/cg166\/evidence [Accessed cited 7 Nov 2018]."},{"key":"2025121403573288000_10.1.e031845.15","doi-asserted-by":"crossref","first-page":"285","DOI":"10.1111\/codi.12538","article-title":"Patient and clinician preferences for surgical and medical treatment options in ulcerative colitis","volume":"16","author":"Byrne","year":"2014","journal-title":"Colorectal Dis"},{"key":"2025121403573288000_10.1.e031845.16","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1016\/j.ejca.2016.07.011","article-title":"Use of implicit persuasion in decision making about adjuvant cancer treatment: a potential barrier to shared decision making","volume":"66","author":"Engelhardt","year":"2016","journal-title":"Eur J Cancer"},{"key":"2025121403573288000_10.1.e031845.17","doi-asserted-by":"crossref","first-page":"1579","DOI":"10.1002\/ibd.20259","article-title":"Embracing the Internet for progress in shared decision-making","volume":"13","author":"Siegel","year":"2007","journal-title":"Inflamm Bowel Dis"},{"key":"2025121403573288000_10.1.e031845.18","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD001431.pub5"},{"key":"2025121403573288000_10.1.e031845.19","doi-asserted-by":"crossref","unstructured":"Stacey D , Bennett CL , Barry MJ , et al . Decision AIDS for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011:CD001431.doi:10.1002\/14651858.CD001431.pub3","DOI":"10.1002\/14651858.CD001431.pub3"},{"key":"2025121403573288000_10.1.e031845.20","doi-asserted-by":"crossref","DOI":"10.1186\/1472-6947-13-S2-S9","article-title":"Do personal stories make patient decision AIDS more effective? A critical review of theory and evidence","volume":"13","author":"Bekker","year":"2013","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025121403573288000_10.1.e031845.21","doi-asserted-by":"publisher","DOI":"10.1097\/SLA.0b013e3182864fd6"},{"key":"2025121403573288000_10.1.e031845.22","unstructured":"Patient Decision Aids - Ottawa Hospital Research Institute [Internet]. Available: https:\/\/decisionaid.ohri.ca\/AZlist.html [Accessed cited 7 Nov 2018]."},{"key":"2025121403573288000_10.1.e031845.23","doi-asserted-by":"crossref","first-page":"1293","DOI":"10.1097\/MIB.0000000000001198","article-title":"A systematic review of Internet decision-making resources for patients considering surgery for ulcerative colitis","volume":"23","author":"Baker","year":"2017","journal-title":"Inflamm Bowel Dis"},{"key":"2025121403573288000_10.1.e031845.24","doi-asserted-by":"crossref","DOI":"10.1186\/1472-6947-13-S2-S2","article-title":"A systematic development process for patient decision AIDS","volume":"13","author":"Coulter","year":"2013","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025121403573288000_10.1.e031845.25","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2016-013219","article-title":"Observational study of the development and evaluation of a fertility preservation patient decision aid for teenage and adult women diagnosed with cancer: the cancer, fertility and me research protocol","volume":"7","author":"Jones","year":"2017","journal-title":"BMJ Open"},{"key":"2025121403573288000_10.1.e031845.26","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1093\/ibd\/izx026","article-title":"The informational needs and preferences of patients considering surgery for ulcerative colitis: results of a qualitative study","volume":"24","author":"Baker","year":"2018","journal-title":"Inflamm Bowel Dis"},{"key":"2025121403573288000_10.1.e031845.27","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X13501721"},{"key":"2025121403573288000_10.1.e031845.28","doi-asserted-by":"crossref","first-page":"2094","DOI":"10.1002\/pon.4429","article-title":"Information needs and decision-making preferences of older women offered a choice between surgery and primary endocrine therapy for early breast cancer","volume":"26","author":"Burton","year":"2017","journal-title":"Psychooncology"},{"key":"2025121403573288000_10.1.e031845.29","first-page":"21","article-title":"The control preferences scale","volume":"29","author":"Degner","year":"1997","journal-title":"Can J Nurs Res"},{"key":"2025121403573288000_10.1.e031845.30","doi-asserted-by":"crossref","DOI":"10.1186\/1472-6947-13-S2-S6","article-title":"Balancing the presentation of information and options in patient decision AIDS: an updated review","volume":"13","author":"Abhyankar","year":"2013","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025121403573288000_10.1.e031845.31","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2753.2005.00596.x"},{"key":"2025121403573288000_10.1.e031845.32","doi-asserted-by":"crossref","DOI":"10.1186\/1472-6947-13-S2-S7","article-title":"Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers","volume":"13","author":"Trevena","year":"2013","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025121403573288000_10.1.e031845.33","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.329.7464.507"},{"key":"2025121403573288000_10.1.e031845.34","doi-asserted-by":"crossref","DOI":"10.1186\/1472-6947-13-S2-S8","article-title":"Clarifying values: an updated review","volume":"13","author":"Fagerlin","year":"2013","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025121403573288000_10.1.e031845.35","doi-asserted-by":"publisher","DOI":"10.1080\/13548509608400003"},{"key":"2025121403573288000_10.1.e031845.36","unstructured":"How to Write Easy-to-Read Health Materials: MedlinePlus [Internet]. Available: https:\/\/medlineplus.gov\/etr.html [Accessed cited 15 Nov 2018]."},{"key":"2025121403573288000_10.1.e031845.37","first-page":"1305","article-title":"Strategies to improve cancer education materials","volume":"23","author":"Doak","year":"1996","journal-title":"Oncol Nurs Forum"},{"key":"2025121403573288000_10.1.e031845.38","unstructured":"Baker SE , Edwards R , Doidge M . How many qualitative interviews is enough? Expert voices and early career reflections on sampling and cases in qualitative research. Southampton, UK: National Centre for Research Methods, 2012."},{"key":"2025121403573288000_10.1.e031845.39","doi-asserted-by":"publisher","DOI":"10.1177\/1525822X05279903"},{"key":"2025121403573288000_10.1.e031845.40","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"2025121403573288000_10.1.e031845.41","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2009.05.012"},{"key":"2025121403573288000_10.1.e031845.42","doi-asserted-by":"crossref","DOI":"10.1186\/1477-7525-12-93","article-title":"Development of a patient decision aid for people with refractory angina: protocol for a three-phase pilot study","volume":"12","author":"McGillion","year":"2014","journal-title":"Health Qual Life Outcomes"},{"key":"2025121403573288000_10.1.e031845.43","doi-asserted-by":"crossref","DOI":"10.1186\/1472-6947-13-S2-S14","article-title":"\u201cMany miles to go \u2026\u201d: a systematic review of the implementation of patient decision support interventions into routine clinical practice","volume":"13","author":"Elwyn","year":"2013","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025121403573288000_10.1.e031845.44","doi-asserted-by":"publisher","DOI":"10.1111\/j.2044-8260.1992.tb00997.x"},{"key":"2025121403573288000_10.1.e031845.45","unstructured":"Stage of Decision Making - Evaluation Measures - Patient Decision Aids - Ottawa Hospital Research Institute [Internet]. Available: https:\/\/decisionaid.ohri.ca\/eval_stage.html [Accessed cited 7 Nov 2018]."},{"key":"2025121403573288000_10.1.e031845.46","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X9501500105"},{"key":"2025121403573288000_10.1.e031845.47","unstructured":"Carrying Out Qualitative Analysis\u201d IN: Ritchie, J. and Lewis, J. - Qualitative research practice: a guide for social science students and researchers, pp. 219-262 | Manchester Metropolitan University [Internet]. Available: https:\/\/mmu.rl.talis.com\/items\/66AF60B5-E551-9DB6-49A9-F7A51E02C076.html [Accessed cited 15 Nov 2018]."}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2019-031845","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,14]],"date-time":"2025-12-14T11:57:41Z","timestamp":1765713461000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2019-031845"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,1]]},"references-count":47,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2020,1,14]]},"published-print":{"date-parts":[[2020,1]]}},"alternative-id":["10.1136\/bmjopen-2019-031845"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2019-031845","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,1]]}}}