Family Matters Project Rolled out to Four More Clinics

9 December 2015
CCY13 Family Matters Team

Follow-up funding awarded to the TCRN Cancer Challenge of the Year (CCY) Family Matters project has resulted in significant benefits for patients with cancer-causing gene mutations.

The funding, which was provided by the TCRN, enabled the Family Matters research team to expand the reach of their purpose-built family communication tool (FCT), rolling it out to clinical staff at four genetic counselling services in NSW and the ACT.

The tool was originally developed by the research team to assist patients diagnosed with BRCA1 and BRCA2 gene mutations, but was modified for bowel cancer genes in the latest stage of the project. The tool works with the patient to help develop an action plan to communicate genetic information to ‘at risk’ relatives.  

In the latest stage of the research, genetic counsellors at participating services were taught to use the FCT with a cohort of 87 patients, all of whom had been identified as carriers the MMR or BRCA gene mutations. These mutations increase the risk of bowel and breast cancer respectively. 

“Carriers of hereditary cancer syndrome genes live with a significantly increased risk of developing cancers, many of which are preventable, or able to be down-staged, by screening,” said Dr Kathy Tucker, the chief investigator for Family Matters and head of the Hereditary Cancer Clinic at Prince of Wales Hospital.

“Although identifying the underling mutation in an individual allows them to benefit by more effective screening and prevention, the main public health benefit comes from preventing cancers in their unaffected relatives.”

The counsellors helped patients communicate their genetic risk to relatives, using the FCT to track who had been informed and who required further follow-up. In the case of complex or strained family relationships, counsellors assisted patients to find alternative plans.

“So if a patient was trying to talk to their sister who they didn’t normally communicate with, for example, we worked with them to find an alternative workaround. This could be something like finding another person in the family who has a good relationship with the sister who can give the information to her in a way that she can hear it,” Dr Tucker said. 

The result of the FCT rollout saw more than half of participating patients take further action to manage their positive mutation status, from resuming screening processes to following up on surgery or returning to see their clinician. A significant number of relatives who were previously unaware of their genetic risk were also informed that they potentially carry a cancer-causing gene mutation. They are now being supported to undergo testing.

“The FCT provided a framework not just for approaching the families but also in providing clear communication for subsequent encounters allowing more effective patient handover,” Professor Tucker said.

“The genetic counsellors, when surveyed, all believed that the FCT assisted them with providing a framework to discuss ‘at risk’ relatives and all of them would use the tool in future.”

This follow-up research also marked the first time that the FCT had been trialled with non-BRCA patients, successfully demonstrating its utility for patients carrying a wide range of gene mutations.

The next step is to continue the expansion of the FCT into genetic counselling services around Australia. A current upgrade of state government systems will see Queensland and South Australia take on the same database system into which the FCT is integrated in NSW, creating opportunities for implementation across multiple states. NSW Health has also flagged the tool to be considered for a statewide rollout in 2016. 

Read more about the work completed through the CCY'13 Family Matters project

Find out more about Cancer Challenge of the Year funding and associated projects.