Development and evaluation of an online, patient-driven, family outreach intervention to facilitate sharing of genetic risk information in families with Lynch syndrome

Cancer patients with a genetic mutation for hereditary cancer are largely responsible for sharing genetic risk information with relatives and encouraging them to have predictive genetic testing. Genetic risk communication within families is incomplete and limited to close relatives. To address this gap, we developed FamilyCONNECT, a provider-mediated, patient-navigated online tool to facilitate family outreach and communication about hereditary cancer risk. Using surveys of Lynch syndrome patients and genetics professionals, and usability testing, we found FamilyCONNECT’s content and features were well-received among patients and providers. FamilyCONNECT may be a useful tool for family outreach and communication about hereditary cancer risk. (By Dr. Mala Pande, https://jmg.bmj.com/content/early/2021/05/18/jmedgenet-2020-107615 )

(Visited 13 times, 1 visits today)