{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T01:17:28Z","timestamp":1784251048607,"version":"3.55.0"},"reference-count":45,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2024,9,23]],"date-time":"2024-09-23T00:00:00Z","timestamp":1727049600000},"content-version":"vor","delay-in-days":22,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000289","name":"Cancer Research UK","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000289","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Psycho-Oncology"],"published-print":{"date-parts":[[2024,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Lynch syndrome carriers (\u2018carriers\u2019) are presented with complex, emotionally laden choices regarding management of increased genetic cancer risks. Decision aids encourage active involvement in values\u2010based health decisions. This paper aimed to address the research question: How do Lynch syndrome carriers make sense of their chances of developing cancer, and what are the implications for providing support with decision making about genetic cancer risk management?<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Adult carriers were recruited through a genetics service or involvement with Lynch Syndrome UK. Semi\u2010structured interviews explored lived experiences of carriers' access to care with a focus on decision support. Themes were constructed using framework analysis. These were developed into a conceptual model with recommendations for codevelopment of improved information and support including a tailored decision aid to complement integrated healthcare.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty participants included 12 women and eight men, half with a history of cancer. Six overarching themes were: (1) finding balance with Lynch; (2) living \u2018on higher alert\u2019; (3) managing uncertainty: \u2018I've thought about it a lot\u2019; (4) burden of responsibility: \u2018It's on me\u2019; (5) access to joined\u2010up care and support: \u2018There's something missing\u2019; and (6) influence\/pressure from others.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>This qualitative interview study provided in\u2010depth insights from Lynch syndrome carriers about their lived experiences, informed by their values. Recommendations to empower carriers to make sense of genetic cancer risks and support decisions included accessible, trusted information, educated healthcare professionals, shared decision making, and joined\u2010up integrated care pathways complemented by tailored decision aids.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pon.9312","type":"journal-article","created":{"date-parts":[[2024,9,24]],"date-time":"2024-09-24T01:57:51Z","timestamp":1727143071000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"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"],"prefix":"10.1002","volume":"33","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"}],"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 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Psychiatry Faculty of Medicine University of Toronto  Toronto Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Hanson","sequence":"additional","affiliation":[{"name":"Peninsula Clinical Genetics Service Royal Devon University Healthcare NHS Foundation Trust  Exeter UK"},{"name":"Department of Clinical and Biomedical Sciences University of Exeter Medical School  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":"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 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