Disseminating risk information to familial adenomatous polyposis families.

ABSTRACT

The Hereditary Cancer Registers (HCR) offer registration to individuals at risk of hereditary bowel cancer. Most families are registered to the HCR via Familial Cancer Clinics (FCC)s. The FCCs work together with the HCR to inform family members that they may be at increased risk of hereditary bowel cancer. In 2002, The Hunter Family Cancer Service (HFCS) and the HCR developed a system to ensure at risk family members become informed of their risk. Evaluation of this system is presented. The system involves tracking which family members are informed of their risk using a rating system. Being informed is graded numerically, from 5 (not informed) through to 1(definitely informed). Changes in score are brought about through staff and the FCC and HCR working with registrants to contact at risk family members. This study analyses data collected for a subgroup of 21 families registered with the HCR by the HFCS. Baseline and resulting scores indicated whether the 738 at risk family members had become better informed of their risk. One hundred and sixty eight individuals changed to a score of "definitely informed" and 230 individuals score changed from "not informed" to being better informed. The results demonstrate significant change in these family members towards becoming better informed (z = -13.88, P < 0.0001, Wilcoxon signed ranks test). These data suggest that the system for informing family members of their risk has resulted in significant positive change towards these individuals becoming more informed. The system has the potential to reach over 2,800 at risk family members, of registered families, resulting in improved surveillance and better health outcomes.