Introduction: Lynch syndrome is the most common cause of hereditary colorectal and endometrial cancer. Lifestyle modification may provide an opportunity for adjunctive cancer prevention. In this study, we aimed to characterise modifiable risk factors in people with Lynch syndrome and compare this with international guidelines for cancer prevention.
Methods: An international, cross-sectional study was carried out utilizing survey methodology. Following public and patient involvement (PPI), the survey was disseminated through patient advocacy groups and by social media. Self-reported demographic and health behaviours were collected in April 2023. Guidelines from the World Cancer Research Fund (WCRF) were used to compare percentage adherence to 9 lifestyle recommendations, including diet, physical activity, weight, and alcohol intake. Median adherence scores, as a surrogate for an individuals’ lifestyle risk, were calculated and compared between groups.
Results: 156 individuals with Lynch syndrome participated from 13 countries. The median age was 51, and 54% (n=88) were cancer survivors. Self-reported pathogenic variants included MSH2 (n=54), MSH6 (n=39) MLH1 (n=38), PMS2 (n=17) and EPCAM (n=4). The mean BMI was 26.7 and the mean weekly duration of moderate to vigorous physical activity was 90 minutes. Median weekly consumption of ethanol was 60 grams, and 3% reported current smoking. Adherence to WCRF recommendations for cancer prevention ranged from 9% to 73%, with all but one recommendation having <50% adherence. The median adherence score was 2.5 out of 7. There was no significant association between median adherence scores and age (p=0.27), sex (p=0.31), or cancer history (p=0.75).
Conclusions: We have characterised the modifiable risk profile of people living with Lynch syndrome, outlining targets for intervention based on lifestyle guidelines for the general population. As evidence supporting the relevance of modifiable factors in Lynch syndrome emerges, behavioural modification may prove an impactful means of cancer prevention.