Win AK, Jenkins MA, Dowty JG et al (2017) Prevalence and penetrance of major genes and polygenes for colorectal cancer. Cancer Epidemiol Biomarkers Prev 26:404–412

Article  CAS  PubMed  Google Scholar 

Hodan R, Gupta S, Weiss JM et al (2024) Genetic/familial high-risk assessment: colorectal, endometrial, and gastric, version 3.2024, NCCN clinical practice guidelines in oncology. J Natl Compr Canc Netw 22:695–711

Article  CAS  PubMed  Google Scholar 

Adan F, Crijns MB, Zandstra WSE et al (2018) Cumulative risk of skin tumours in patients with Lynch syndrome. Br J Dermatol 179:522–523

CAS  PubMed  Google Scholar 

Burn J, Sheth H, Elliott F et al (2020) Cancer prevention with aspirin in hereditary colorectal cancer (Lynch syndrome), 10-year follow-up and registry-based 20-year data in the CAPP2 study: a double-blind, randomised, placebo-controlled trial. Lancet 395:1855–1863

Article  CAS  PubMed  PubMed Central  Google Scholar 

Mathers JC, Elliott F, Macrae F et al (2022) Cancer prevention with resistant starch in Lynch syndrome patients in the CAPP2-randomized placebo controlled trial: planned 10-year follow-up. Cancer Prev Res 15:623–634

Article  CAS  Google Scholar 

Mittendorf KF, Hunter JE, Schneider JL et al (2019) Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study. Hered Cancer Clin Pract 17:31

Article  PubMed  PubMed Central  Google Scholar 

van Liere ELSA, Jacobs IL, Dekker E et al (2023) Colonoscopy surveillance in Lynch syndrome is burdensome and frequently delayed. Fam Cancer 22:403–411

Article  PubMed  PubMed Central  Google Scholar 

Patel SG, Ahnen DJ, Kinney AY et al (2016) Knowledge and uptake of genetic counseling and colonoscopic screening among individuals at increased risk for Lynch syndrome and their endoscopists from the family health promotion project. Am J Gastroenterol 111:285–293

Article  PubMed  PubMed Central  Google Scholar 

Singhal S, Riggs ED, Ruth KJ et al (2024) Uptake of Aspirin Chemoprevention in Patients With Lynch Syndrome. JCO Precis Oncol 8:e2400562

Article  PubMed  Google Scholar 

NCCN. Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric. Natl Compr Cancer Netw 2025. 22(10), 695–711

Warner NZ, Gleeson C, Fahey P et al (2022) Experiences of living with Lynch syndrome: a reflexive thematic analysis. Eur J Oncol Nurs 58:102117

Article  PubMed  Google Scholar 

Ryan N, Nobes M, Sedgewick D et al (2021) A mismatch in care: results of a United Kingdom—wide patient and clinician survey of gynaecological services for women with Lynch syndrome. BJOG 128:728–736

Article  PubMed  Google Scholar 

Srinivasan S, Hampel H, Leeman J et al (2020) Stakeholder perspectives on overcoming barriers to cascade testing in Lynch syndrome: a qualitative study. Cancer Prev Res 13:1037–1046

Article  Google Scholar 

Campbell-Salome G, Buchanan AH, Hallquist MLG et al (2021) Uncertainty management for individuals with Lynch syndrome: identifying and responding to healthcare barriers. Patient Educ Couns 104:403–412

Article  PubMed  Google Scholar 

Anon. Lynch Choices—Lynch choices. Available at: https://canchoose.org.uk/ [Accessed October 20, 2025].

Hopkinson MI, Sooch R, Beauvais C et al (2025) Investigating the use of a patient—facing digital app to support Lynch syndrome carriers in the management of their condition. J Med Genet 62:628–630

Article  CAS  PubMed  Google Scholar 

Palinkas LA, Horwitz SM, Green CA et al (2015) Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health 42:533–544

Article  PubMed  PubMed Central  Google Scholar 

Malterud K, Siersma VD, Guassora AD (2016) Sample size in qualitative interview studies: guided by information power. Qual Health Res 26:1753–1760

Article  PubMed  Google Scholar 

Hsieh H-F, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15:1277–1288

Article  PubMed  Google Scholar 

Kowalski CP, Nevedal AL, Finley EP et al (2024) Planning for and assessing rigor in rapid qualitative analysis (PARRQA): a consensus-based framework for designing, conducting, and reporting. Implement Sci 19:71

Article  PubMed  PubMed Central  Google Scholar 

Kohut K, Morton K, Turner L et al (2024) I live with Lynch. Cancer worry ebbs into the background, then something brings it to the fore”. A qualitative interview study exploring how Lynch syndrome carriers make sense of their cancer risks and implications to support decision making. Psychooncology 33:e9312

Article  PubMed  Google Scholar 

den Heijer M, Seynaeve C, Vanheusden K et al (2011) Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support. Psychooncology 20:1317–1323

Article  Google Scholar 

Koehly LM, Peters JA, Kuhn N et al (2008) Sisters in hereditary breast and ovarian cancer families: communal coping, social integration, and psychological well-being. Psychooncology 17:812–821

Article  PubMed  PubMed Central  Google Scholar 

Callen EF, Clay TL, Cogan W et al (2024) Community social networking for Ehlers-Danlos syndrome. Health Educ Behav. https://doi.org/10.1177/10901981241292275

Article  PubMed  Google Scholar 

Seven M, Pachucki MC, Gould D et al (2023) Evaluation of family and community social network characteristics among high-risk family members to improve cancer-related health behaviors. Oncol Nurs Forum 50:735–751

PubMed  Google Scholar 

Ersig AL, Williams JK, Hadley DW et al (2009) Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study. Genet Med 11:728–734

Article  PubMed  PubMed Central  Google Scholar