World-first study proves gene carriers can help peers

Tuesday 18 November, 2014

In a world first, Victorian researchers have proved that women who carry a gene fault (or mutation) that increases cancer risk are well placed to help their peers cope in the wake of the same diagnosis.

The study published today in the Journal of Clinical Oncology, and led by Cancer Council Victoria researchers, found one-to-one peer support delivered via the telephone reduces distress as well as unmet information needs of women who carry the BRCA1 or BRAC2 gene mutation. This is the first randomized controlled trial in the world of a community based support program for this group of women.

Carrying BRAC1 or BRAC2 gene mutations significantly increases a woman's risk of developing both breast cancer and ovarian cancer.

Lead study author, and Principal Research Fellow at Cancer Council Victoria, Associate Professor Victoria White said earlier research had suggested many women who found out they were carrying a gene mutation felt their existing social support networks were inadequate.

"When a woman learns they have a genetic mutation they are faced with a series of issues and complex decisions on how to manage their increased risk of cancer, as well those related to child bearing and telling family," Associate Professor White said.

"Such women can experience increased levels of distress in both the short and long term, and our study shows that peer support is one way to support people in this difficult situation."

The study recruited 207 women through familial cancer clinics in Victoria, New South Wales and South Australia who were randomized into two groups: those who received usual care, and those who were contacted by a trained peer volunteer who provided information, as well as emotional and practical support over four months.

On average, those women paired with a peer received about four calls. As a result of such contact with their peer these women's levels of distress were lower at the end of the intervention as well as when they were followed up two months later.

Associate Professor Michael Jefford said the findings were of interest to those treating people with cancer and people with a high risk of developing cancer. As a medical oncologist, senior clinical consultant to Cancer Council and co-author on the study, he said: "It's critical for health care workers to understand the value of peer support and refer cancer patients as these services complement the information and support that they provide."

Cancer Council Victoria Support Services Manager Sue Merritt said the research provided evidence to support similar peer support programs that have been offered to Victorians since 1975.

"We know this type of support is valued highly by users who report lower levels of anxiety and increased confidence in talking to health professionals. However, this is the first time we have concrete evidence that such telephone-based peer support can benefit not only those who have cancer but also those who are at higher risk of developing cancer," Ms Merritt said.

Those eligible to take part in the study were women aged over 18 years, who had completed standard genetic counselling, did not have advanced cancer and had found out they were carrying a gene mutation within the past five years.

Anyone who wants to access one-on-one telephone peer support, including people at higher risk of being diagnosed with cancer, should call Cancer Council 13 11 20.