Informing cancer risk via index patients or direct healthcare contacts - challenges for risk communication

Abstract

Background: Risk information of heritable but actionable cancers like Lynch syndrome (LS) is usually communicated through family-mediated approach (FMA) via index-patient. Register information in 2015 indicates that 54% of carriers’ children have not taken genetic test for LS. Half of non-tested are adults and may be developing a life-threatening disease which could be prevented with regular surveillance. We will compare two approaches to communicate risk information. Methods: In study 1 (FMA), we approached all carriers with children (n= 248) asking how they have shared the risk information with offspring. In study 2, we contacted directly (DCA) with the help of LS research register all known high-risk LS family members who had not taken the test earlier in 2003 (n=286, of which 51% consenting). Findings: In FMA study, only six out of 248 parents indicated that they did not have a plan to inform their adult children. Of the 440 children informed, only 5 had reported to their parents that they will not take the test. In DCA study, 97% reported that they knew someone with cancer in the family and 74% were aware of the heightened cancer risk in their family. Common reason for not taking the test were mainly related to procrastination. Conclusions: Discrepancy between two studies reveal that risk information alone does not lead to genetic testing even in high-risk situation. According to direct contact approach, there is need to identify additional strategies for risk communication that lower the gap between intention and behaviour.