Communication Tool Creates Better Health Outcomes for BRCA Families

15 January 2015
Photograph of Family Matters team - Emma Healey, Rachel Williams, Dr Kathy Tucker and Dr Claire Wakefield

A recently completed Cancer Challenge of the Year (CCY) project is estimated to have prevented seven cases of ovarian cancer and 14 cases of breast cancer, thanks to the implementation of an information sharing tool that helps families with cancer-causing gene mutations seek early intervention.

Called Family Matters, the project sought to help patients diagnosed with BRCA1 and BRCA2 gene mutations notify family members of their potential risk of hereditary cancer and encourage them to undergo genetic testing.

“We were interested in re-stimulating discussion about the relevance of the information for the relatives, and if testing hadn’t happened in the family, talking through why it’s important and what information we could help provide to help facilitate getting that information passed onto the relatives, said Emma Healey, a research officer in the project team.

BRCA gene mutations are responsible for five per cent of all breast cancers, and result in a significant increase in risk for breast and ovarian cancers for women, as well as increased risk of breast cancer for men. A well-established genetic link means that anyone directly related to a patient diagnosed with the gene mutation may also be a carrier. As a result, clear communication of BRCA status among at-risk family members is critical to cancer prevention and early diagnosis.

The Family Matters study resulted in 37 per cent of participants from 150 families informing a previously unaware relative of their BRCA status. One or more relatives of 25 per cent the study cohort also underwent genetic testing for the gene mutation.

“We had over 100 new individuals informed as a result of the study, and over 60 relatives have come in and had genetic testing,” Emma said.

The communication tool used in the study was adapted from similar tools already being used by the Hunter Family Cancer Service and the NSW and ACT Hereditary Cancer Registry. According to Emma, the tool provides a highly efficient way of tracking the progress of each patient’s family members, whether they’d been informed of the patient’s mutation status and whether they had undergone genetic testing for the gene mutation themselves.

“Our primary [objective was] to see whether or not we’d been successful in encouraging families to inform relatives who had previously been uninformed,” she said.

The tool also delivers exciting potential for other hereditary diseases in which communication between families is key to positive health outcomes. In 2015, the research team will roll the tool out across genetic counselling services at Wollongong, St George, Canberra and Prince of Wales hospitals. Emma said the team would ultimately like to see it being used to aid communication among families carrying a range of cancer gene mutations, such as Lynch Syndrome and familial adenomatous polyposis, and other genetic conditions.

Read more about the Family Matters project. 

The TCRN Cancer Challenge of the Year (CCY) is a unique funding opportunity that provides up to $100,000 to support one to two translational research projects that address an urgent and unmet need in cancer patient care or treatment. The focus of the CCY is on creating solutions to today’s priority problems in order to make rapid and appropriate gains in the improvement of cancer patient care and treatment outcomes.