Lynch Syndrome care in United Kingdom and Ireland

Aims Despite guidelines for tumour testing from NICE there are still significant gaps in identification of LS carriers. This study aims to explore what LS carriers perceive about their current care; how supported they feel, identify some of their biggest concerns, and understand the current care perception for participants. The end goal of this study is to assist both the UK and Ireland in moving forward with improved holistic care for patients with LS, including those who do not know they have LS but need to be tested.

Methods This was a descriptive study, incorporating measured reactions to tatements about patient care. Participants were chosen using a convenience sample, utilising two Facebook groups made by LS carriers, and posting the link on LinkedIn. Participants shared how much they agreed with statements using the Likert scale. A text box at the end of the survey was provided for participants to share more if inclined. At the time of this abstract, 271 responses qualified for the study (people residing in Ireland or the United Kingdom). 360 total were completed [1] [2] [3] [4].

Results Most people participating identified themselves as women living in the Mainland of the United Kingdom, living within what would be considered a reasonable distance from their endoscopy centre. 56% of respondents say they are on an aspirin regime as it is under study for its health benefits in people with LS and lowers their risk of bowel cancer. 18% stated they were unaware of aspirin regimes or that they asked their GP who declined to put them on it without a clear reason, which is too high of a number for patients who should be properly informed and evaluated for an effective, low risk and inexpenive way to lower bowel cancer risk.26% of people surveyed believed their GPs were adequately educated about Lynch Syndrome. Only 30% of participants were informed about menopause and HRTs after prophylactic hysterectomies; in the text boxes there was also a themethat health care professionals that know -anything- about Lynch, may -only- know about the colon cancer risk; there seems to be a bigger gap of knowledge in gynae specialties compared to GPs. Test timeliness had a positive response; 76% of respondents felt they were given their colonoscopies in a timely manner. Only 28% feel that Covid 19 significantly delayed surveillance care.

Conclusions Lynch syndrome carriers have mixed results when navigating the post-pandemic world with their genetic disorder. While the overall response was positive about timely colonoscopies and at fairly close centres, there is room for improvement in aspirin therapy and full person centred care. Input from text boxes also revealed themes faced by participants and their journey with Lynch- fragmented care, specialties working in silos, encountering medical professionals with no knowledge of Lynch, mental health concerns. There is much to be evaluated and improved.

Publikationsverlauf

Artikel online veröffentlicht:
27. März 2025

• References

• 1 https://www.esge.com/assets/downloads/pdfs/guidelines/2019_a_1016_4977.pdf
• 2 Burn, JohnBoussioutas, Alex et al. 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. The Lancet. 395 Issue 10240 1855-1863
• 3 https://www.bsg.org.uk/BSG/media/BSG-Media/Guidelines-for-the-management-of-hereditary-colorectal-cancer-full_.pdf
• 4 NHS England, 2024. Colonoscopic surveillance for people with Lynch syndrome, Bowel Cancer Screening Programme. Retrieved 28 June 2024 through St Marks Hospital, England