Background
People with a genetic predisposition for cancer face a range of physical and emotional issues related to their increased cancer risk. Feelings of anxiety and uncertainty are common, particularly around prophylactic surgery. Distress levels can be at similar levels to people with a cancer diagnosis. Peer support has been shown to reduce stress and anxiety and to increase confidence when talking to health professionals.
Gene Connect is a free telephone-based peer support program that provides emotional and practical support to people with a high genetic risk of developing cancer. The program matches people to a specially trained volunteer who has the same genetic risk factor. In 2015 Cancer Council Victoria is expanding the program from volunteers who are BRCA 1 or 2 positive without a cancer diagnosis to include other genetic markers and those who have gone on to develop cancer.
Method
Volunteers were recruited and trained who were: i) gene positive for Lynch Syndrome; ii) BRCA 1 or 2 positive with breast cancer or iii) gene negative after extensive testing.
Information sessions and visits were provided to health professionals and Familial Cancer Centres to build awareness of the program and to establish referral pathways.
Results
Eleven new Gene Connect volunteers were recruited to the program: 2 with Lynch Syndrome, 7 with BRCA 1 or 2 gene and breast cancer, and 2 people with no gene identified after extensive testing. Training was provided and evaluated in early 2015. Early feedback from health professionals, including genetic counsellors, is that new research on the benefits of peer support, combined with an expanded program and number of volunteers will increase referrals to Gene Connect.
Conclusions
Broadening the volunteer base and engaging with health professionals and Familial Cancer Centres are strategies employed to increase the number of people accessing Gene Connect.