Background:
BRCA1/BRCA2 predictive testing in at-risk relatives provides many benefits. Survival outcomes for mutation-carriers can be improved by screening and risk-reducing interventions. Realisation of these benefits relies on communication between carriers and their at-risk relatives, however disseminating this information poses significant challenges. To assist, we have developed a Family Communication Tool (FCT), a table which records informed status of at-risk relatives.
Aim:
To 1) assess the effectiveness of the FCT in increasing dissemination and uptake of predictive testing by at-risk family members; 2) determine what personal and family characteristics are associated with lower levels of dissemination.
Methods:
BRCA1/BRCA2-carriers identified from four hospitals were invited to participate in the study. A telephone interview of consenting patients asked about informed status of at-risk relatives, uptake of predictive testing in relatives, and geographical location of relatives. This information was recorded within the FCT. Patients yet to inform all relatives were provided advice, offered a standard dissemination letter to provide to relatives, and advised of online resources to assist with dissemination. Patients will be followed-up 2-4 months after their initial phone call to determine whether the FCT and associated counselling had facilitated dissemination. The genetic database will be audited to count the number of associated predictive testing appointments made in the study period.
Results:
Data to date from 165 individuals revealed 45% had not informed ≥1 relative, with an average of 6.2 uninformed. Further analysis will reveal whether associations exist between dissemination levels and personal and family cancer history, family size, relatives’ geographical location, and Jewish ancestry. Effectiveness of the FCT will be measured upon completion of follow-up in November 2014.
Conclusions:
This study will provide evidence on whether the FCT is valuable in assisting with dissemination, and to help understand the demographic characteristics of families who are more likely to require such support.