Assessing the adherence to guidelines in Lynch syndrome patients: a pilot study.

BACKGROUND: Cancer surveillance is important in the management of Lynch syndrome. In New South Wales, management guidelines for Lynch syndrome are published on the eviQ website. Benefits of cancer surveillance are maximized through adherence to guidelines. This has yet to be investigated in Sydney. Hence, this study aimed to determine the adherence rate of patients to these guidelines, assess their knowledge of the guidelines and determine potential factors hindering regular colonoscopies in these patients. METHODS: A cross-sectional study was conducted among Lynch syndrome patients from the St Vincent's Hospital Cancer Genetics Unit, Sydney. Patients who appropriately fulfilled our inclusion criteria were mailed a questionnaire. The questionnaire was mailed twice to increase the response rate. Demographic and medical information were collected from patient medical records. Patient responses were analysed to determine adherence to the guidelines. RESULTS: Sixty-two individuals were invited to participate in this study. Among them, 47 responded (76%) with two being excluded, due to potential confounding factors. Thirty (67%) had their colonoscopies at recommended intervals, while 15 (33%) had delays. Within these two groups, many were ultimately deemed non-adherent to the guidelines due to over-screening with other tests. In total, 31 (69%) participants were considered over-screening for cancer, leaving only seven (16%) participants fully adherent to the guidelines. Only three (7%) had knowledge of the eviQ guidelines. CONCLUSIONS: Adherence to the eviQ guidelines was poor. The majority of participants were being over-screened for cancer. Knowledge of the guidelines needs to be improved.