CCY '13: Family matters! Dissemination of genetic information about breast and ovarian cancer genes within families to prevent cancers.

Family matters! Dissemination of genetic information about breast and ovarian cancer genes within families to prevent cancers.

Principal Investigator 1: Dr Kathy Tucker, Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick, NSW.

Principal Investigator 2: Rachel Williams, Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick, NSW.

Co-investigators:

  • Claire Wakefield, University of NSW, Kids Cancer Centre, Sydney Children's Hospital, Cancer Institute of NSW
  • Sian Greening, The Wollongong Hospital
  • Linda Warwick, The Canberra Hospital
  • Emma Healey, Prince of Wales Clinical School, UNSW Australia 

Background:

An exponential increase in referrals of families with a history of hereditary breast and ovarian cancer has identified a large number of BRCA1 and BRCA2 mutation carriers. Public health benefit for cancer prevention depends on disseminating appropriate information to those at risk. Barriers to family communication are diverse but real; only two in ten at-risk relatives are usually informed. The team at the Hereditary Cancer Clinic, Prince of Wales Hospital have developed a Family Communication Tool to improve dissemination of information when an individual is identified as a BRCA1 or BRCA2 gene carrier. This is expected to significantly reduce stress and anxiety surrounding informing relatives of their cancer risk.

The purpose of this study is to:

  • Follow-up on our patients to see how they are going
  • Work out whether individuals who have trouble talking about BRCA1 and BRCA2 feel more distressed
  • See if the Family Communication Tool can help to alleviate this distress
  • See if the Family Communication Tool will assist in helping patients inform at-risk relatives

Please note: this is not an open study. BRCA1/2 carriers identified through the Hereditary Cancer Centres at Prince of Wales Hospital, Wollongong Hospital, St George Hospital and Canberra Hospital have been sent an invitation to participate. If you have been sent an invitation, please click on the link below to partake in the study. You will need to provide the study ID given to you in the invitation letter. 

Here is the survey link:  

Please click here to partake in this survey

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Project Updates & News Articles:

Learn more about the 2013 Cancer Challenge of the Year; 'Family Matters' by following the latest project updates:

- December 2015: Follow-up funding completion; Family Matters Project Rolled out to Four More Clinics

- January 2015: Communication Tool Creates Better Health Outcomes for BRCA Families

- November 2013: All in the family: Cancer Challenge of the Year targets better communication for at-risk families