Lynch syndrome is an autosomal dominant inherited condition which predisposes individuals to developing certain cancers, including endometrial, colorectal and/or ovarian cancer. However, most people with Lynch syndrome are not aware that they have the condition. National Institute for Health and Care Excellence (NICE) guidance recommends that all patients with endometrial cancer should be tested for Lynch syndrome and that healthcare professionals should inform patients of the possible implications of test results for themselves and their relatives, and should make clinical genetics referrals where appropriate.

This article details a cross-sectional survey that was undertaken to determine the level of awareness and understanding of Lynch syndrome among patients with endometrial cancer in the UK and to identify best practice and areas for improvement. Of the 144 eligible respondents, most were neither aware of Lynch syndrome before their cancer diagnosis nor that NICE recommends testing for the syndrome. Many respondents diagnosed with Lynch syndrome did not receive verbal or written information on the condition or referral to a clinical geneticist. This is necessary to increase patient uptake of testing and support them in sharing information with their relatives.