{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T01:17:29Z","timestamp":1784251049545,"version":"3.55.0"},"reference-count":116,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,8,7]],"date-time":"2025-08-07T00:00:00Z","timestamp":1754524800000},"content-version":"vor","delay-in-days":6,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000289","name":"Cancer Research UK","doi-asserted-by":"publisher","award":["C61296\/A27223"],"award-info":[{"award-number":["C61296\/A27223"]}],"id":[{"id":"10.13039\/501100000289","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["NIHR300650"],"award-info":[{"award-number":["NIHR300650"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100014653","name":"Manchester Biomedical Research Centre","doi-asserted-by":"publisher","award":["NIHR203308"],"award-info":[{"award-number":["NIHR203308"]}],"id":[{"id":"10.13039\/100014653","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2025,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Lynch syndrome \u201ccarriers\u201d carry a germline pathogenic variant conferring gene\u2010, sex\u2010, and organ\u2010specific increased cancer risks. They are presented with difficult, interrelated choices over their lifetime. This study was part of a larger project to codesign a health intervention, Lynch Choices\u2122 <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xlink:href=\"https:\/\/canchoose.org.uk\">https:\/\/canchoose.org.uk<\/jats:ext-link> to provide an information hub and decision support for carriers, their family members, and clinicians. This study aimed to answer the research question: What content, framing, and design elements of a decision aid for genetic cancer risk management are important to Lynch syndrome carriers? Adult carriers were invited to a think\u2010aloud interview to hear their thoughts about a prototype version of Lynch Choices\u2122 containing values\u2010clarification exercises. The first half of interviews focused on the gynecological risk\u2010reducing surgery and the second half on the aspirin decision aid. Twenty carriers (eight men) were interviewed, half of whom had a personal history of cancer. Iterative refinement of Lynch Choices\u2122 content and design was completed between interviews using a transparent table of changes from the person\u2010based approach. Following the interviews, reflexive thematic analysis was applied to the entire qualitative dataset. Three themes were constructed to guide further optimization and make recommendations for improved cancer risk communication in clinical practice. The three themes were: (1) Interpreting gene\u2010specific cancer risks and \u201cWhat does it mean to me?\u201d; (2) Words matter: Careful phrasing is important to feel understood; (3) Decision aids: They can help but might trigger emotions. Think\u2010aloud interviews provided in\u2010depth insight into the psychosocial context of carriers. This informed optimization of the decision aid to support engagement and promote shared decision making with healthcare professionals. The learning from this study had broader implications beyond decision aid development, to understanding preferences, needs, and experiences regarding genetic cancer risk communication and decision support.<\/jats:p>","DOI":"10.1002\/jgc4.70089","type":"journal-article","created":{"date-parts":[[2025,8,7]],"date-time":"2025-08-07T09:53:28Z","timestamp":1754560408000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Optimizing risk\u2010reducing surgery and aspirin decision aids for Lynch syndrome carriers using the person\u2010based approach: A think\u2010aloud interview study"],"prefix":"10.1002","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9852-2872","authenticated-orcid":false,"given":"Kelly","family":"Kohut","sequence":"first","affiliation":[{"name":"Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences University of Southampton  Southampton UK"},{"name":"South West Thames Centre for Genomics, Clinical Genetics Service St George's University Hospitals NHS Foundation Trust  London UK"},{"name":"Department of Clinical and Biomedical Sciences University of Exeter Medical School  Exeter UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Morton","sequence":"additional","affiliation":[{"name":"Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences University of Southampton  Southampton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lesley","family":"Turner","sequence":"additional","affiliation":[{"name":"Patient and Public Collaborator  Southampton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Foster","sequence":"additional","affiliation":[{"name":"Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences University of Southampton  Southampton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth K.","family":"Bancroft","sequence":"additional","affiliation":[{"name":"Urology Genetics The Royal Marsden NHS Foundation Trust  Sutton UK"},{"name":"Oncogenetics Team The Institute of Cancer Research  Sutton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Burn","sequence":"additional","affiliation":[{"name":"Faculty of Medical Sciences Newcastle University  Newcastle upon Tyne UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma J.","family":"Crosbie","sequence":"additional","affiliation":[{"name":"Division of Cancer Sciences, St Mary's Hospital University of Manchester  Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mev","family":"Dominguez\u2010Valentin","sequence":"additional","affiliation":[{"name":"Tumour Biology Department, Institute for Cancer Research Oslo University Hospital  Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary Jane","family":"Esplen","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Faculty of Medicine University of Toronto  Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Hanson","sequence":"additional","affiliation":[{"name":"Department of Clinical and Biomedical Sciences University of Exeter Medical School  Exeter UK"},{"name":"Peninsula Clinical Genetics Service Royal Devon University Healthcare NHS Foundation Trust  Exeter UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen","family":"Hurley","sequence":"additional","affiliation":[{"name":"Stanford R Weiss, MD Center for Hereditary Colorectal Neoplasia Cleveland Clinic  Cleveland Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"P\u00e5l","family":"Moller","sequence":"additional","affiliation":[{"name":"Tumour Biology Department, Institute for Cancer Research Oslo University Hospital  Oslo Norway"},{"name":"Department NEON\u2010S, Faculty of Medicine and Health Technology Tampere University and TAYS Cancer Centre  Tampere Finland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Neil","family":"Ryan","sequence":"additional","affiliation":[{"name":"Department of Gynaecological Oncology Royal Infirmary of Edinburgh  Edinburgh UK"},{"name":"Centre for Reproductive Health, Institute of Regeneration and Repair University of Edinburgh  Edinburgh UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie","family":"Snape","sequence":"additional","affiliation":[{"name":"South West Thames Centre for Genomics, Clinical Genetics Service St George's University Hospitals NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"CanGene\u2010CanVar Patient Reference Panel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"International Lynch Decision Aid Stakeholder Panel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diana","family":"Eccles","sequence":"additional","affiliation":[{"name":"Faculty of Medicine University of Southampton  Southampton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire","family":"Foster","sequence":"additional","affiliation":[{"name":"Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences University of Southampton  Southampton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,8,7]]},"reference":[{"issue":"1","key":"e_1_2_14_2_1","doi-asserted-by":"crossref","DOI":"10.1186\/s13012-017-0605-9","article-title":"A guide to using the theoretical domains framework of behaviour change to investigate implementation problems","volume":"12","author":"Atkins L.","year":"2017","journal-title":"Implementation Science"},{"issue":"1","key":"e_1_2_14_3_1","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1186\/s13012-017-0553-4","article-title":"Intervention planning for a digital intervention for self\u2010management of hypertension: A theory\u2010, evidence\u2010 and person\u2010based approach","volume":"12","author":"Band R.","year":"2017","journal-title":"Implementation Science"},{"key":"e_1_2_14_4_1","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1016\/j.cancergen.2022.02.010","article-title":"Somatic tumor testing implications for Lynch syndrome germline genetic testing","volume":"264","author":"Barrus K.","year":"2022","journal-title":"Cancer Genetics"},{"key":"e_1_2_14_5_1","doi-asserted-by":"crossref","DOI":"10.1016\/j.psychres.2019.04.025","article-title":"Implementation science: What is it and why should I care?","volume":"283","author":"Bauer M. S.","year":"2020","journal-title":"Psychiatry Research"},{"issue":"3","key":"e_1_2_14_6_1","doi-asserted-by":"crossref","DOI":"10.1101\/cshperspect.a038968","article-title":"Genetic counseling and the central tenets of practice","volume":"10","author":"Biesecker B.","year":"2020","journal-title":"Cold Spring Harbor Perspectives in Medicine"},{"issue":"2","key":"e_1_2_14_7_1","doi-asserted-by":"crossref","first-page":"322","DOI":"10.1007\/s10897-016-0023-1","article-title":"Theories for psychotherapeutic genetic counseling: Fuzzy trace theory and cognitive behavior theory","volume":"26","author":"Biesecker B.","year":"2017","journal-title":"Journal of Genetic Counseling"},{"issue":"2","key":"e_1_2_14_8_1","doi-asserted-by":"crossref","first-page":"170.e1\u2013e9","DOI":"10.1016\/j.jpurol.2022.01.004","article-title":"Ask the parents: Testing the acceptability and usability of a hypospadias decision aid","volume":"18","author":"Binion K.","year":"2022","journal-title":"Journal of Pediatric Urology"},{"issue":"2","key":"e_1_2_14_9_1","doi-asserted-by":"crossref","first-page":"86","DOI":"10.1136\/bmjqs-2020-012786","article-title":"Is greater patient involvement associated with higher satisfaction? Experimental evidence from a vignette survey","volume":"31","author":"Birkeland S.","year":"2022","journal-title":"BMJ Quality and Safety"},{"issue":"7","key":"e_1_2_14_10_1","doi-asserted-by":"crossref","first-page":"821","DOI":"10.1177\/0272989X21996328","article-title":"Current best practice for presenting probabilities in patient decision aids: Fundamental principles","volume":"41","author":"Bonner C.","year":"2021","journal-title":"Medical Decision Making"},{"issue":"5","key":"e_1_2_14_11_1","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0196868","article-title":"Using the person\u2010based approach to optimise a digital intervention for the management of hypertension","volume":"13","author":"Bradbury K.","year":"2018","journal-title":"PLoS One"},{"key":"e_1_2_14_12_1","doi-asserted-by":"crossref","DOI":"10.1155\/2014\/561320","article-title":"Developing digital interventions: A methodological guide","volume":"2014","author":"Bradbury K.","year":"2014","journal-title":"Evidence\u2010based Complementary and Alternative Medicine"},{"issue":"2","key":"e_1_2_14_13_1","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun V.","year":"2006","journal-title":"Qualitative Research in Psychology"},{"issue":"4","key":"e_1_2_14_14_1","doi-asserted-by":"crossref","first-page":"589","DOI":"10.1080\/2159676X.2019.1628806","article-title":"Reflecting on reflexive thematic analysis","volume":"11","author":"Braun V.","year":"2019","journal-title":"Qualitative Research in Sport, Exercise and Health"},{"issue":"3","key":"e_1_2_14_15_1","doi-asserted-by":"crossref","first-page":"328","DOI":"10.1080\/14780887.2020.1769238","article-title":"One size fits all? What counts as quality practice in (reflexive) thematic analysis?","volume":"18","author":"Braun V.","year":"2021","journal-title":"Qualitative Research in Psychology"},{"key":"e_1_2_14_16_1","doi-asserted-by":"crossref","DOI":"10.1007\/978-3-319-69909-7_3470-2","volume-title":"Thematic analysis: A practical guide","author":"Braun V.","year":"2022"},{"issue":"4","key":"e_1_2_14_17_1","doi-asserted-by":"crossref","first-page":"695","DOI":"10.1080\/17437199.2022.2161594","article-title":"Is thematic analysis used well in health psychology? A critical review of published research, with recommendations for quality practice and reporting","volume":"17","author":"Braun V.","year":"2023","journal-title":"Health Psychology Review"},{"issue":"1","key":"e_1_2_14_18_1","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1080\/26895269.2022.2129597","article-title":"Toward good practice in thematic analysis: Avoiding common problems and be(com)ing a knowing researcher","volume":"24","author":"Braun V.","year":"2023","journal-title":"International Journal of Transgender Health"},{"issue":"6","key":"e_1_2_14_19_1","doi-asserted-by":"crossref","first-page":"608","DOI":"10.1177\/02692163241234800","article-title":"Supporting best practice in reflexive thematic analysis reporting in palliative medicine: A review of published research and introduction to the reflexive thematic analysis reporting guidelines (RTARG)","volume":"38","author":"Braun V.","year":"2024","journal-title":"Palliative Medicine"},{"issue":"3","key":"e_1_2_14_20_1","doi-asserted-by":"crossref","DOI":"10.1093\/heapro\/daae049","article-title":"A critical review of the reporting of reflexive thematic analysis in health promotion international","volume":"39","author":"Braun V.","year":"2024","journal-title":"Health Promotion International"},{"issue":"3","key":"e_1_2_14_21_1","doi-asserted-by":"crossref","first-page":"1391","DOI":"10.1007\/s11135-021-01182-y","article-title":"A worked example of Braun and Clarke's approach to reflexive thematic analysis","volume":"56","author":"Byrne D.","year":"2022","journal-title":"Quality & Quantity"},{"issue":"2","key":"e_1_2_14_22_1","doi-asserted-by":"crossref","first-page":"403","DOI":"10.1016\/j.pec.2020.07.017","article-title":"Uncertainty management for individuals with Lynch syndrome: Identifying and responding to healthcare barriers","volume":"104","author":"Campbell\u2010Salome G.","year":"2021","journal-title":"Patient Education and Counseling"},{"key":"e_1_2_14_23_1","doi-asserted-by":"crossref","first-page":"1947","DOI":"10.2147\/PPA.S173705","article-title":"\u201cI don't know exactly what you're referring to\u201d: The challenge of values elicitation in decision making for implantable cardioverter\u2010defibrillators","volume":"12","author":"Carroll S. L.","year":"2018","journal-title":"Patient Preference and Adherence"},{"issue":"8","key":"e_1_2_14_24_1","first-page":"588","article-title":"Brief questions to identify patients with inadequate health literacy","volume":"36","author":"Chew L. D.","year":"2004","journal-title":"Family Medicine"},{"issue":"2","key":"e_1_2_14_25_1","doi-asserted-by":"crossref","first-page":"S2","DOI":"10.1186\/1472-6947-13-S2-S2","article-title":"A systematic development process for patient decision aids","volume":"13","author":"Coulter A.","year":"2013","journal-title":"BMC Medical Informatics and Decision Making"},{"key":"e_1_2_14_26_1","volume-title":"Designing and conducting mixed methods research","author":"Creswell J. A. P. C. V. L.","year":"2018"},{"key":"e_1_2_14_27_1","volume-title":"The foundations of social research: Meaning and perspective in the research process","author":"Crotty M.","year":"1998"},{"key":"e_1_2_14_28_1","volume-title":"Foundations of social research: Meaning and perspective in the research process","author":"Crotty M.","year":"1998"},{"issue":"1","key":"e_1_2_14_29_1","doi-asserted-by":"crossref","DOI":"10.1186\/1748-5908-4-50","article-title":"Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science","volume":"4","author":"Damschroder L. J.","year":"2009","journal-title":"Implementation Science"},{"key":"e_1_2_14_30_1","doi-asserted-by":"crossref","first-page":"200","DOI":"10.5116\/ijme.5763.de11","article-title":"Constructivism: Reflections on twenty five years teaching the constructivist approach in medical education","volume":"7","author":"Dennick R.","year":"2016","journal-title":"International Journal of Medical Education"},{"key":"e_1_2_14_31_1","doi-asserted-by":"crossref","DOI":"10.1016\/j.eclinm.2023.101909","article-title":"Mortality by age, gene and gender in carriers of pathogenic mismatch repair gene variants receiving surveillance for early cancer diagnosis and treatment: A report from the prospective Lynch syndrome database","volume":"58","author":"Dominguez\u2010Valentin M.","year":"2023","journal-title":"EClinicalMedicine"},{"issue":"7","key":"e_1_2_14_32_1","doi-asserted-by":"crossref","first-page":"1591","DOI":"10.1016\/j.pec.2020.11.032","article-title":"Shared decision making: What is the work?","volume":"104","author":"Elwyn G.","year":"2021","journal-title":"Patient Education and Counseling"},{"issue":"1","key":"e_1_2_14_33_1","doi-asserted-by":"crossref","first-page":"75","DOI":"10.1186\/1748-5908-4-75","article-title":"Dual equipoise shared decision making: Definitions for decision and behaviour support interventions","volume":"4","author":"Elwyn G.","year":"2009","journal-title":"Implementation Science"},{"key":"e_1_2_14_34_1","doi-asserted-by":"crossref","DOI":"10.1186\/s13012-016-0480-9","article-title":"Implementing shared decision\u2010making: Consider all the consequences","volume":"11","author":"Elwyn G.","year":"2016","journal-title":"Implementation Science"},{"issue":"1","key":"e_1_2_14_35_1","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1057\/s41599-021-00782-1","article-title":"Co\u2010producing knowledge in health and social care research: Reflections on the challenges and ways to enable more equal relationships","volume":"8","author":"Farr M.","year":"2021","journal-title":"Humanities and Social Sciences Communications"},{"issue":"8","key":"e_1_2_14_36_1","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1136\/dtb.2019.000008","article-title":"How to communicate evidence to patients","volume":"57","author":"Freeman A. L. J.","year":"2019","journal-title":"Drug and Therapeutics Bulletin"},{"issue":"635","key":"e_1_2_14_37_1","doi-asserted-by":"crossref","DOI":"10.3399\/bjgp15X685285","article-title":"A mismatch between population health literacy and the complexity of health information: An observational study","volume":"65","author":"Gillian R.","year":"2015","journal-title":"British Journal of General Practice"},{"issue":"1","key":"e_1_2_14_38_1","doi-asserted-by":"crossref","first-page":"1264","DOI":"10.1186\/s12885-022-10347-3","article-title":"The co\u2010development of personalised 10\u2010year breast cancer risk communications: A \u2018think\u2010aloud\u2019 study","volume":"22","author":"Gorman L. S.","year":"2022","journal-title":"BMC Cancer"},{"issue":"1","key":"e_1_2_14_39_1","doi-asserted-by":"crossref","first-page":"297","DOI":"10.1007\/s00520-018-4307-x","article-title":"Development of breast cancer choices: A decision support tool for young women with breast cancer deciding whether to have genetic testing for BRCA1\/2 mutations","volume":"27","author":"Grimmett C.","year":"2019","journal-title":"Supportive Care in Cancer"},{"issue":"1","key":"e_1_2_14_40_1","doi-asserted-by":"crossref","first-page":"877","DOI":"10.1186\/s12913-022-08079-y","article-title":"The use of co\u2010production, co\u2010design and co\u2010creation to mobilise knowledge in the management of health conditions: A systematic review","volume":"22","author":"Grindell C.","year":"2022","journal-title":"BMC Health Services Research"},{"issue":"3","key":"e_1_2_14_41_1","doi-asserted-by":"crossref","first-page":"438","DOI":"10.1016\/j.amepre.2020.08.010","article-title":"Improving patient engagement through patient decision support","volume":"60","author":"Grossman Liu L.","year":"2021","journal-title":"American Journal of Preventive Medicine"},{"issue":"1","key":"e_1_2_14_42_1","doi-asserted-by":"crossref","first-page":"14","DOI":"10.1186\/s40900-022-00347-9","article-title":"How can we recruit more men of African or African\u2010Caribbean ancestry into our research? Co\u2010creating a video to raise awareness of prostate cancer risk and the PROFILE study","volume":"8","author":"Hainsworth E.","year":"2022","journal-title":"Research Involvement and Engagement"},{"issue":"11","key":"e_1_2_14_43_1","doi-asserted-by":"crossref","first-page":"2603","DOI":"10.1016\/j.pec.2021.09.001","article-title":"Medical uncertainty: Putting flesh on the bones","volume":"104","author":"Han P. K. J.","year":"2021","journal-title":"Patient Education and Counseling"},{"key":"e_1_2_14_44_1","doi-asserted-by":"crossref","DOI":"10.1093\/oso\/9780190270582.001.0001","volume-title":"Uncertainty in medicine: A framework for tolerance","author":"Han P. K. J.","year":"2021"},{"issue":"5","key":"e_1_2_14_45_1","doi-asserted-by":"crossref","first-page":"842","DOI":"10.1016\/j.pec.2018.12.009","article-title":"Communicating uncertainty in cancer prognosis: A review of web\u2010based prognostic tools","volume":"102","author":"Harrison M.","year":"2019","journal-title":"Patient Education and Counseling"},{"issue":"6","key":"e_1_2_14_46_1","doi-asserted-by":"crossref","first-page":"881","DOI":"10.1038\/ejhg.2015.196","article-title":"BRCA1\/2 testing in newly diagnosed breast and ovarian cancer patients without prior genetic counselling: The DNA\u2010BONus study","volume":"24","author":"H\u00f8berg\u2010Vetti H.","year":"2016","journal-title":"European Journal of Human Genetics"},{"issue":"7","key":"e_1_2_14_47_1","doi-asserted-by":"crossref","first-page":"755","DOI":"10.1177\/0272989X21996622","article-title":"Basing information on comprehensive, critically appraised, and up\u2010to\u2010date syntheses of the scientific evidence: An update from the international patient decision aid standards","volume":"41","author":"Hoffmann T. C.","year":"2021","journal-title":"Medical Decision Making"},{"issue":"3","key":"e_1_2_14_48_1","doi-asserted-by":"crossref","first-page":"568","DOI":"10.1002\/jgc4.1546","article-title":"Risk assessment and genetic counseling for Lynch syndrome \u2013 Practice resource of the National Society of genetic counselors and the collaborative Group of the Americas on inherited gastrointestinal cancer","volume":"31","author":"Holter S.","year":"2022","journal-title":"Journal of Genetic Counseling"},{"key":"e_1_2_14_49_1","doi-asserted-by":"crossref","DOI":"10.2196\/44914","article-title":"A web\u2010based cancer self\u2010management program (I\u2010can manage) targeting treatment toxicities and health behaviors: Human\u2010centered Co\u2010design approach and cognitive think\u2010aloud usability testing","volume":"9","author":"Howell D.","year":"2023","journal-title":"JMIR Cancer"},{"issue":"7","key":"e_1_2_14_50_1","doi-asserted-by":"crossref","first-page":"907","DOI":"10.1177\/0272989X20978208","article-title":"What works in implementing patient decision aids in routine clinical settings? A rapid realist review and update from the international patient decision aid standards collaboration","volume":"41","author":"Joseph\u2010Williams N.","year":"2021","journal-title":"Medical Decision Making"},{"issue":"6","key":"e_1_2_14_51_1","doi-asserted-by":"crossref","first-page":"699","DOI":"10.1177\/0272989X13501721","article-title":"Toward minimum standards for certifying patient decision aids: A modified Delphi consensus process","volume":"34","author":"Joseph\u2010Williams N.","year":"2014","journal-title":"Medical Decision Making"},{"issue":"2","key":"e_1_2_14_52_1","doi-asserted-by":"crossref","first-page":"263","DOI":"10.2307\/1914185","article-title":"Prospect theory: An analysis of decision under risk","volume":"47","author":"Kahneman D.","year":"1979","journal-title":"Econometrica"},{"issue":"2","key":"e_1_2_14_53_1","doi-asserted-by":"crossref","first-page":"72","DOI":"10.5694\/mja2.50356","article-title":"The predicted impact and cost\u2010effectiveness of systematic testing of people with incident colorectal cancer for Lynch syndrome","volume":"212","author":"Kang Y.\u2010J.","year":"2020","journal-title":"Medical Journal of Australia"},{"issue":"1","key":"e_1_2_14_54_1","doi-asserted-by":"crossref","first-page":"223","DOI":"10.1186\/s12911-023-02327-9","article-title":"Effectiveness of evidence\u2010based decision aids for women with pathogenic BRCA1 or BRCA2 variants in the german health care context: Results from a randomized controlled trial","volume":"23","author":"Kautz\u2010Freimuth S.","year":"2023","journal-title":"BMC Medical Informatics and Decision Making"},{"issue":"2","key":"e_1_2_14_55_1","doi-asserted-by":"crossref","DOI":"10.1111\/hex.13995","article-title":"Patient readiness for shared decision making about treatment: Conceptualisation and development of the ReadySDM","volume":"27","author":"Keij S. M.","year":"2024","journal-title":"Health Expectations"},{"issue":"7","key":"e_1_2_14_56_1","doi-asserted-by":"crossref","first-page":"763","DOI":"10.1080\/13548506.2018.1427876","article-title":"Does message framing affect changes in behavioural intentions in people with psoriasis? A randomized exploratory study examining health risk communication","volume":"23","author":"Keyworth C.","year":"2018","journal-title":"Psychology, Health & Medicine"},{"key":"e_1_2_14_57_1","doi-asserted-by":"crossref","DOI":"10.2196\/52688","article-title":"New approach to equitable intervention planning to improve engagement and outcomes in a digital health program: Simulation study","volume":"9","author":"Killian J. A.","year":"2024","journal-title":"JMIR Diabetes"},{"key":"e_1_2_14_58_1","doi-asserted-by":"crossref","DOI":"10.1111\/hex.13844","article-title":"\u2018A good decision is the one that feels right for me\u2019: Codesign with patients to inform theoretical underpinning of a decision aid website","volume":"27","author":"Kohut K.","year":"2023","journal-title":"Health Expectations"},{"issue":"9","key":"e_1_2_14_59_1","doi-asserted-by":"crossref","DOI":"10.1002\/pon.9312","article-title":"\u2018I live with Lynch. Cancer worry ebbs into the background, then something brings it to the fore.\u2019 A qualitative interview study exploring how Lynch syndrome carriers make sense of their cancer risks and implications to support decision making","volume":"33","author":"Kohut K.","year":"2024","journal-title":"Psycho\u2010Oncology"},{"issue":"3","key":"e_1_2_14_60_1","doi-asserted-by":"crossref","DOI":"10.1002\/pon.6330","article-title":"Codesign of Lynch ChoicesTM: Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways","volume":"33","author":"Kohut K.","year":"2024","journal-title":"Psycho\u2010Oncology"},{"key":"e_1_2_14_61_1","doi-asserted-by":"crossref","DOI":"10.3389\/frhs.2023.1092816","article-title":"Patient decision support resources inform decisions about cancer susceptibility genetic testing and risk management: A systematic review of patient impact and experience","volume":"3","author":"Kohut K.","year":"2023","journal-title":"Frontiers in Health Services"},{"issue":"1","key":"e_1_2_14_62_1","doi-asserted-by":"crossref","first-page":"112","DOI":"10.1038\/ng.283","article-title":"Heritable somatic methylation and inactivation of MSH2 in families with Lynch syndrome due to deletion of the 3\u2032 exons of TACSTD1","volume":"41","author":"Ligtenberg M. J.","year":"2009","journal-title":"Nature Genetics"},{"issue":"5","key":"e_1_2_14_63_1","doi-asserted-by":"crossref","first-page":"696","DOI":"10.1177\/0272989X07307271","article-title":"Numeric, verbal, and visual formats of conveying health risks: Suggested best practices and future recommendations","volume":"27","author":"Lipkus I. M.","year":"2007","journal-title":"Medical Decision Making"},{"issue":"1","key":"e_1_2_14_64_1","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1186\/s13053-022-00235-z","article-title":"Barriers and facilitators to using aspirin for preventive therapy: A qualitative study exploring the views and experiences of people with Lynch syndrome and healthcare providers","volume":"20","author":"Lloyd K. E.","year":"2022","journal-title":"Hereditary Cancer in Clinical Practice"},{"issue":"13","key":"e_1_2_14_65_1","doi-asserted-by":"crossref","first-page":"1753","DOI":"10.1177\/1049732315617444","article-title":"Sample size in qualitative interview studies: Guided by information power","volume":"26","author":"Malterud K.","year":"2016","journal-title":"Qualitative Health Research"},{"issue":"1","key":"e_1_2_14_66_1","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1258\/1355819054308576","article-title":"Systematically reviewing qualitative and quantitative evidence to inform management and policy\u2010making in the health field","volume":"10","author":"Mays N.","year":"2005","journal-title":"Journal of Health Services Research & Policy"},{"key":"e_1_2_14_67_1","doi-asserted-by":"crossref","DOI":"10.1186\/1748-5908-6-42","article-title":"The behaviour change wheel: A new method for characterising and designing behaviour change interventions","volume":"6","author":"Michie S.","year":"2011","journal-title":"Implementation Science"},{"issue":"1","key":"e_1_2_14_68_1","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1186\/s13053-023-00263-3","article-title":"Dominantly inherited micro\u2010satellite instable cancer \u2013 The four Lynch syndromes \u2013 An EHTG, PLSD position statement","volume":"21","author":"M\u00f8ller P.","year":"2023","journal-title":"Hereditary Cancer in Clinical Practice"},{"issue":"2","key":"e_1_2_14_69_1","first-page":"A204","article-title":"P293 finding the missing 95%: The English national lynch syndrome transformation project","volume":"72","author":"Monahan K.","year":"2023","journal-title":"Gut"},{"issue":"4","key":"e_1_2_14_70_1","doi-asserted-by":"crossref","first-page":"213","DOI":"10.1136\/bmjebm-2022-112068","article-title":"Shared decision\u2010making as a method of care","volume":"28","author":"Montori V. M.","year":"2022","journal-title":"BMJ Evidence\u2010Based Medicine"},{"issue":"2","key":"e_1_2_14_71_1","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1177\/160940690200100202","article-title":"Verification strategies for establishing reliability and validity in qualitative research","volume":"1","author":"Morse J. M.","year":"2002","journal-title":"International Journal of Qualitative Methods"},{"key":"e_1_2_14_72_1","doi-asserted-by":"crossref","DOI":"10.3389\/fpubh.2021.668197","article-title":"Adapting behavioral interventions for a changing public health context: A worked example of implementing a digital intervention during a global pandemic using rapid optimisation methods","volume":"9","author":"Morton K.","year":"2021","journal-title":"Frontiers in Public Health"},{"key":"e_1_2_14_73_1","doi-asserted-by":"crossref","DOI":"10.3389\/fdgth.2022.1039701","article-title":"Person\u2010based co\u2010design of a decision aid template for people with a genetic predisposition to cancer","volume":"4","author":"Morton K.","year":"2022","journal-title":"Frontiers in Digital Health"},{"issue":"7","key":"e_1_2_14_74_1","doi-asserted-by":"crossref","first-page":"848","DOI":"10.1177\/0272989X211011101","article-title":"Addressing health literacy in patient decision aids: An update from the international patient decision aid standards","volume":"41","author":"Muscat D. M.","year":"2021","journal-title":"Medical Decision Making"},{"key":"e_1_2_14_75_1","unstructured":"National Institute for Health and Care Excellence. (2017).Molecular testing strategies for Lynch syndrome in people with colorectal cancer."},{"key":"e_1_2_14_76_1","unstructured":"National Institute for Health and Care Excellence. (2020).Testing strategies for Lynch syndrome in people with endometrial cancer."},{"key":"e_1_2_14_77_1","volume-title":"Clinical Guideline [CG138] Patient experience in adult NHS services: Improving the experience of care for people using adult NHS services | Guidance | NICE","author":"National Institute for Health and Care Excellence","year":"2021"},{"issue":"2","key":"e_1_2_14_78_1","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1037\/0022-006X.61.2.221","article-title":"An appraisal of constructivist psychotherapies","volume":"61","author":"Neimeyer R. A.","year":"1993","journal-title":"Journal of Consulting and Clinical Psychology"},{"key":"e_1_2_14_79_1","unstructured":"NHS England. (2019).NHS long term plan."},{"key":"e_1_2_14_80_1","unstructured":"NHS England. (2021).NHS genomic medicine service. Retrieved July 27 2021 fromhttps:\/\/www.england.nhs.uk\/genomics\/nhs\u2010genomic\u2010med\u2010service\/"},{"issue":"2","key":"e_1_2_14_81_1","doi-asserted-by":"crossref","first-page":"313","DOI":"10.1007\/s10549-018-5000-y","article-title":"High patient satisfaction with a simplified BRCA1\/2 testing procedure: Long\u2010term results of a prospective study","volume":"173","author":"Nilsson M. P.","year":"2019","journal-title":"Breast Cancer Research and Treatment"},{"issue":"1","key":"e_1_2_14_82_1","doi-asserted-by":"crossref","DOI":"10.1186\/1756-0500-7-896","article-title":"Identification of gain\u2010 and loss\u2010framed cancer screening messages that appeared in municipal newsletters in Japan","volume":"7","author":"Okuhara T.","year":"2014","journal-title":"BMC Research Notes"},{"issue":"5","key":"e_1_2_14_83_1","doi-asserted-by":"crossref","first-page":"783","DOI":"10.1053\/j.gastro.2022.08.058","article-title":"Lynch syndrome genetics and clinical implications","volume":"164","author":"Peltom\u00e4ki P.","year":"2023","journal-title":"Gastroenterology"},{"key":"e_1_2_14_84_1","doi-asserted-by":"crossref","DOI":"10.3389\/fpsyt.2023.1083196","article-title":"How do people with MND and caregivers experience a digital mental health intervention? A qualitative study","volume":"14","author":"Pinto C.","year":"2023","journal-title":"Frontiers in Psychiatry"},{"issue":"35","key":"e_1_2_14_85_1","doi-asserted-by":"crossref","first-page":"32","DOI":"10.1177\/014107689809135S08","article-title":"Qualitative research and evidence\u2010based healthcare","volume":"91","author":"Popay J.","year":"1998","journal-title":"Journal of the Royal Society of Medicine"},{"key":"e_1_2_14_86_1","doi-asserted-by":"crossref","first-page":"2860","DOI":"10.1016\/j.pec.2022.05.009","article-title":"Bringing personal perspective elicitation to the heart of shared decision\u2010making: A scoping review","volume":"105","author":"Rake E. A.","year":"2022","journal-title":"Patient Education and Counseling"},{"issue":"3","key":"e_1_2_14_87_1","doi-asserted-by":"crossref","first-page":"429","DOI":"10.1111\/j.1467-9566.2007.01064.x","article-title":"Distributed decision making: The anatomy of decisions\u2010in\u2010action","volume":"30","author":"Rapley T.","year":"2008","journal-title":"Sociology of Health & Illness"},{"issue":"6","key":"e_1_2_14_88_1","doi-asserted-by":"crossref","first-page":"850","DOI":"10.1177\/0272989X08327066","article-title":"A theory of medical decision making and health: Fuzzy trace theory","volume":"28","author":"Reyna V. F.","year":"2008","journal-title":"Medical Decision Making"},{"key":"e_1_2_14_89_1","volume-title":"Qualitative research practice: A guide for social science students and researchers","author":"Ritchie J.","year":"2014"},{"issue":"1","key":"e_1_2_14_90_1","doi-asserted-by":"crossref","first-page":"3390","DOI":"10.1038\/s41598-020-60149-5","article-title":"Oncologist\u2010led BRCA \u2018mainstreaming\u2019 in the ovarian cancer clinic: A study of 255 patients and its impact on their management","volume":"10","author":"Rumford M.","year":"2020","journal-title":"Scientific Reports"},{"issue":"2","key":"e_1_2_14_91_1","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1002\/nur.4770180211","article-title":"Sample size in qualitative research","volume":"18","author":"Sandelowski M.","year":"1995","journal-title":"Research in Nursing & Health"},{"issue":"1","key":"e_1_2_14_92_1","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1002\/jgc4.1463","article-title":"Metaphors and why these are important in all aspects of genetic counseling","volume":"31","author":"Sexton A.","year":"2022","journal-title":"Journal of Genetic Counseling"},{"key":"e_1_2_14_93_1","doi-asserted-by":"publisher","DOI":"10.14324\/RFA.09.1.06"},{"issue":"2","key":"e_1_2_14_94_1","first-page":"143","article-title":"More breast cancer patients prefer BRCA\u2010mutation testing without prior face\u2010to\u2010face genetic counseling","volume":"13","author":"Sie A. S.","year":"2014","journal-title":"Familial Cancer"},{"key":"e_1_2_14_95_1","doi-asserted-by":"crossref","DOI":"10.1016\/j.ijnurstu.2024.104748","article-title":"Introducing the revised framework for developing and evaluating complex interventions: A challenge and a resource for nursing research","volume":"154","author":"Skivington K.","year":"2024","journal-title":"International Journal of Nursing Studies"},{"key":"e_1_2_14_96_1","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.n2061","article-title":"A new framework for developing and evaluating complex interventions: Update of Medical Research Council guidance","volume":"374","author":"Skivington K.","year":"2021","journal-title":"BMJ"},{"issue":"58","key":"e_1_2_14_97_1","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3310\/hta18580","article-title":"A systematic review and economic evaluation of diagnostic strategies for Lynch syndrome","volume":"18","author":"Snowsill T.","year":"2014","journal-title":"Health Technology Assessment"},{"issue":"1","key":"e_1_2_14_98_1","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1146\/annurev-statistics-010814-020148","article-title":"Risk and uncertainty communication","volume":"4","author":"Spiegelhalter D.","year":"2017","journal-title":"Annual Review of Statistics and Its Application"},{"issue":"3","key":"e_1_2_14_99_1","doi-asserted-by":"crossref","first-page":"379","DOI":"10.1177\/0272989X20911870","article-title":"20th anniversary Ottawa decision support framework: Part 3 overview of systematic reviews and updated framework","volume":"40","author":"Stacey D.","year":"2020","journal-title":"Medical Decision Making"},{"key":"e_1_2_14_100_1","article-title":"Decision aids for people facing health treatment or screening decisions","volume":"4","author":"Stacey D.","year":"2017","journal-title":"Cochrane Database of Systematic Reviews"},{"issue":"1","key":"e_1_2_14_101_1","article-title":"Decision aids for people facing health treatment or screening decisions","volume":"1","author":"Stacey D.","year":"2024","journal-title":"Cochrane Database of Systematic Reviews"},{"issue":"4","key":"e_1_2_14_102_1","doi-asserted-by":"crossref","first-page":"229","DOI":"10.1200\/JOP.18.00019","article-title":"Lessons in integrating shared decision\u2010making into cancer care","volume":"14","author":"Steffensen K. D.","year":"2018","journal-title":"Journal of Oncology Practice\/American Society of Clinical Oncology"},{"issue":"1","key":"e_1_2_14_103_1","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1016\/j.jval.2015.12.003","article-title":"Multiple criteria decision analysis for health care decision making\u2014An introduction: Report 1 of the ISPOR MCDA emerging good practices task force","volume":"19","author":"Thokala P.","year":"2016","journal-title":"Value in Health"},{"issue":"12","key":"e_1_2_14_104_1","doi-asserted-by":"crossref","first-page":"1179","DOI":"10.1136\/jmg-2022-108655","article-title":"A digital pathway for genetic testing in UK NHS patients with cancer: BRCA\u2010DIRECT randomised study internal pilot","volume":"59","author":"Torr B.","year":"2022","journal-title":"Journal of Medical Genetics"},{"issue":"7","key":"e_1_2_14_105_1","doi-asserted-by":"crossref","first-page":"834","DOI":"10.1177\/0272989X21996342","article-title":"Current challenges when using numbers in patient decision aids: Advanced concepts","volume":"41","author":"Trevena L. J.","year":"2021","journal-title":"Medical Decision Making"},{"issue":"2","key":"e_1_2_14_106_1","doi-asserted-by":"crossref","first-page":"S7","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 L. J.","year":"2013","journal-title":"BMC Medical Informatics and Decision Making"},{"issue":"6","key":"e_1_2_14_107_1","doi-asserted-by":"crossref","first-page":"713","DOI":"10.1007\/s10897-007-9113-4","article-title":"Coming full circle: A reciprocal\u2010engagement model of genetic counseling practice","volume":"16","author":"Veach P. M.","year":"2007","journal-title":"Journal of Genetic Counseling"},{"issue":"2","key":"e_1_2_14_108_1","doi-asserted-by":"crossref","first-page":"300","DOI":"10.1002\/jgc4.1644","article-title":"Considerations for the use of qualitative methodologies in genetic counseling research","volume":"32","author":"Wainstein T.","year":"2023","journal-title":"Journal of Genetic Counseling"},{"key":"e_1_2_14_109_1","doi-asserted-by":"crossref","DOI":"10.1016\/j.ejon.2022.102117","article-title":"Experiences of living with Lynch syndrome: A reflexive thematic analysis","volume":"58","author":"Warner N. Z.","year":"2022","journal-title":"European Journal of Oncology Nursing"},{"issue":"1","key":"e_1_2_14_110_1","doi-asserted-by":"crossref","first-page":"1007","DOI":"10.1186\/s12913-022-08372-w","article-title":"A qualitative reflexive thematic analysis into the experiences of being identified with a BRCA1\/2 gene alteration: \u201cso many little, little traumas could have been avoided\u201d","volume":"22","author":"Warner N. Z.","year":"2022","journal-title":"BMC Health Services Research"},{"issue":"3","key":"e_1_2_14_111_1","doi-asserted-by":"crossref","first-page":"404","DOI":"10.1158\/1055-9965.EPI-16-0693","article-title":"Prevalence and penetrance of major genes and polygenes for colorectal cancer","volume":"26","author":"Win A. K.","year":"2017","journal-title":"Cancer Epidemiology, Biomarkers & Prevention"},{"issue":"7","key":"e_1_2_14_112_1","doi-asserted-by":"crossref","first-page":"736","DOI":"10.1177\/0272989X211014163","article-title":"Systematic development of patient decision aids: An update from the IPDAS collaboration","volume":"41","author":"Witteman H. O.","year":"2021","journal-title":"Medical Decision Making"},{"issue":"7","key":"e_1_2_14_113_1","doi-asserted-by":"crossref","first-page":"801","DOI":"10.1177\/0272989X211037946","article-title":"Clarifying values: An updated and expanded systematic review and meta\u2010analysis","volume":"41","author":"Witteman H. O.","year":"2021","journal-title":"Medical Decision Making"},{"issue":"2","key":"e_1_2_14_114_1","doi-asserted-by":"crossref","first-page":"181","DOI":"10.1016\/j.cptl.2020.09.005","article-title":"Using cognitive interviews and think\u2010aloud protocols to understand thought processes","volume":"13","author":"Wolcott M. D.","year":"2021","journal-title":"Currents in Pharmacy Teaching & Learning"},{"issue":"1","key":"e_1_2_14_115_1","doi-asserted-by":"crossref","DOI":"10.2196\/jmir.4055","article-title":"The person\u2010based approach to intervention development: Application to digital health\u2010related behavior change interventions","volume":"17","author":"Yardley L.","year":"2015","journal-title":"Journal of Medical Internet Research"},{"key":"e_1_2_14_116_1","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1186\/1472-6947-10-52","article-title":"Understanding reactions to an internet\u2010delivered health\u2010care intervention: Accommodating user preferences for information provision","volume":"10","author":"Yardley L.","year":"2010","journal-title":"BMC Medical Informatics and Decision Making"},{"issue":"1","key":"e_1_2_14_117_1","doi-asserted-by":"crossref","first-page":"5","DOI":"10.1186\/s13053-024-00278-4","article-title":"Information needs of Lynch syndrome and BRCA 1\/2 mutation carriers considering risk\u2010reducing gynecological surgery: A qualitative study of the decision\u2010making process","volume":"22","author":"Zhao L.","year":"2024","journal-title":"Hereditary Cancer in Clinical Practice"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jgc4.70089","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,8,7]],"date-time":"2025-08-07T09:53:47Z","timestamp":1754560427000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/jgc4.70089"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8]]},"references-count":116,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2025,8]]}},"alternative-id":["10.1002\/jgc4.70089"],"URL":"https:\/\/doi.org\/10.1002\/jgc4.70089","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"value":"1059-7700","type":"print"},{"value":"1573-3599","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,8]]},"assertion":[{"value":"2024-08-18","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-07-16","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-08-07","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70089"}}