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P9 The impact of the East Midlands lynch syndrome network (EMLSEN): comparing patient feedback from baseline to 18 months of EMSLEN

jmedgenet · 2026-01-28 · canonical JSON source

14 visible annotations · policy: published · automated confidence ≥ 75.00%

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Introduction Estimations suggest 1 in 350 people have Lynch syndrome (LS). The East Midlands Lynch Syndrome Expert Network (EMLSEN) was commissioned to improve LS testing and management. The EMLSEN MDT consists of healthcare professionals from oncology, colorectal surgery, gynaecology, clinical genetics, and GP; they seek to engage and support LS patients and family care in East Midlands (EM).Purpose Assess the EMLSEN impact in LS patients over 18 months.Methods Baseline data (BD) were collected August - October 2023, and follow-up data (FUD) were collected March – June 2025. BD established that 48 LS patients out of 214 participated (22.4% response rate), and FUD confirmed 133 participated out of 346 (38.4% response rate), representing a 16% participation increase.Results Comparisons of BD with FUD found an increase in patients diagnosed with LS through cascade testing (44% to 54%) versus their own cancer diagnosis. FUD found 17% more of participants discussed H pylori testing with their GP, and 11% more of LS patients reported currently taking chemoprevention compared to BD.Conclusion EMLSEN appears to be positively impacting LS care, however there is room for improvement. Next steps will include understanding the barriers for patients not having H pylori testing or taking chemoprevention.