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We aimed to investigate patients\u2019 perception and preferences regarding surveillance, and to further explore compliance behaviour. Individuals with Lynch syndrome received a validated survey evaluating experiences of their three most recent colonoscopies. Individuals were non-compliant to surveillance if the interval between colonoscopies differed\u2009\u2265\u20096\u00a0months from the recommended interval. In total, 197 of 291 (68%) invited individuals returned the survey. They mostly underwent colonoscopy biennially (99%), under mild sedation (79%) and with bowel preparation performed by Moviprep\u00ae (99%). Surveillance was perceived as impacting quality of life in 21%, and as moderately to extremely burdensome in 57%, particularly in those below age 40. To lower the burden, patients prioritised improvements in volume and taste of bowel preparation, laxation-related bowel movements, waiting times, and a more personal and respectful approach of endoscopic staff. Additionally, many individuals (60%) would favour less-invasive surveillance modalities such as biomarkers. In total, 28% of individuals had delayed colonoscopy surveillance, predominantly for patient-related reasons. An additional 10% considered quitting\/postponing surveillance. Upon multivariable analysis, patient-related delay was associated with low and medium education, history of\u2009\u2264\u20094 colonoscopies and having no hospital recall-system. Colonoscopy surveillance in Lynch syndrome is often experienced as burdensome, and frequently delayed. We identified determinants of surveillance behaviour in this population, and present potential interventions to reduce the burden and non-compliance rates.<\/jats:p>","DOI":"10.1007\/s10689-023-00333-4","type":"journal-article","created":{"date-parts":[[2023,5,12]],"date-time":"2023-05-12T05:02:26Z","timestamp":1683867746000},"page":"403-411","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":26,"title":["Colonoscopy surveillance in Lynch syndrome is burdensome and frequently delayed"],"prefix":"10.1007","volume":"22","author":[{"given":"Elsa L. S. 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ED has endoscopic equipment on a loan of FujiFilm and has received a research grant from FujiFilm. She has received an honorarium for a consultancy from FujiFilm, Olympus, InterVenn and Ambu, and speakers' fees from Olympus, GI Supply, Norgine, IPSEN, PAION and FujiFilm. NdB has served as a speaker for AbbVie and MSD and has served as a consultant and principal investigator for TEVA Pharma BV and Takeda. He has received a research grant (unrestricted) from Dr. Falk, TEVA Pharma BV, Dutch Digestive Foundation (MLDS) and Takeda. DR has received a research grant (unrestricted) from AbbVie, outside the submitted work. He has served as a member of the Data Safety Monitoring Board of Vivoryon Therapeutics.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"This study was approved by the Research Ethical Committee of Amsterdam UMC (2021.0516). This study was performed in line with the principles of the Declaration of Helsinki.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Digital informed consent via Castor was obtained from all participants included in this study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed consent"}}]}}