Examining Lynch Syndrome Carriers’ Perceptions of Care in the UK and Ireland

Authors

Departments / Institutions

Introduction

Introduction: Lynch Syndrome (LS), accounts for 3% of all colorectal cancers. Despite guidelines for tumour testing from NICE there are still significant gaps in identification of LS carriers.

Aims

Aim:  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

Methods: This is a descriptive study, incorporating questions measuring statements 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 provided space for participants to elucidate if inclined.

Results

Results: 268 participants completed the survey, 210 qualifying for the survey from UK/Ireland. Questions included if they are on aspirin (57% yes), were told about hysterectomy options (29% agree), was their surveillance timely (77% agree) and do they feel they receive holistic care (19% agree).

Conclusion

Conclusion: LS carriers have mixed results when navigating the post-pandemic world with their disease. 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 LS- fragmented care, working in silos, encountering medical professionals with no knowledge of LS, mental health concerns. There is much to be evaluated and improved. (statistics up to date as of 13 aug 2024; survey is still active)