Nov 17, 2014
By Shira Klapper, Senior Writer/Editor
Women testing positive for a BRCA1 or BRCA2 mutation can experience a host of distressing emotions. First, there is the difficulty of figuring out how to manage the increased risk for developing breast or ovarian cancer—for example, should they receive preventive chemotherapy or should they undergo preventive surgical procedures, and if they do, how will this affect their potential for childbearing? Women often find it difficult to gather the information they need in order to answer such questions.
Now, a study in the Journal of Clinical Oncology (JCO) asks: Can this cancer-related distress and unmet need for information be reduced if women with a BRCA1/2 mutation have the chance to talk about their concerns and discuss management choices with peers over the phone? The answer is yes—at least in the short term—according to the study, “Randomized Controlled Trial of a Telephone-Based Peer Support Program for women carrying a BRCA1 or BRCA2 Mutation: Impact on Psychological Distress,” published online, ahead of print, November 17.
“Our study suggests that a telephone-based peer support program that involves multiple contacts between the peer and the woman being supported is effective in reducing women's cancer-related distress and unmet information needs—at least in the short term,” said Victoria White, MA, PhD, Principal Research Fellow at Cancer Council Victoria in Melbourne, Australia.
Associate Professor White added, “This is the first study that looked to women within the community to ameliorate the stresses that accompany the diagnoses of a BRCA1/2 mutation. In addition, it is the first randomized controlled trial of telephone-based peer support for people affected by cancer to show that this type of support program can have a positive impact on participants' well-being.”
Peer-to-peer support via phone
The study’s participants included 337 women who were within five years of their BRCA diagnosis and who had responded to a study invitation letter. In keeping with the study design, women interested in talking to other women “peers” with a BRCA1/2 mutation (a total of 207 women) were randomized into two groups: those who received usual care and those who received the phone calls from peers.
Training for peers was accomplished via a three-day training program that included practice calls, as well as a program manual that contains information regarding supportive communication, challenges in providing support, common information needs of mutation carriers, and resources for peers and support recipients. Peers were matched with recently diagnosed women based on similar characteristics, such as history of cancer and risk-reducing surgery, age, marital status, and whether they had children.
All participants completed a questionnaire at the outset of the study and then at the four-month and six-month time points. The questionnaires measured the primary outcome of cancer related stress, as well as secondary outcomes of unmet informational needs and cognitive appraisals about mutation testing.
The benefit of peer-support intervention
When the researchers compared questionnaires from the two groups of the randomly assigned women, they found that those in the peer support program—receiving on average 3.7 calls over four months—reported significantly lower cancer-related stress, compared to women who received usual care. The women who received the peer-phone calls also reported significant improvements in unmet needs for information, which was not found among the “support as usual” group.
While encouraging, the size of the differences between groups was reduced at the six-month follow-up point, and the differences were no longer statistically significant for the study’s secondary outcomes.
According to Associate Professor White, the results from the four-month point are promising and open the possibility that clinics may refer women to this kind of peer-support program if they are diagnosed with a BRCA1/2 mutation.
“Clinics can ask their patients if they are interested in talking to other similar women or if they are interested in taking part in peer support programs, and if they are, women should be informed of local, community-based peer support programs that are relevant,” said Associate Professor White. “Interest in this sort of program could be assessed when women visit clinics.”
As for the finding that comparative benefits were not sustained through the six-month time point, Associate Professor White said this warrants further study.
“We need to investigate why the effect of the program was not maintained at the six-month follow-up point and look at ways we can strengthen the support program to hopefully ensure the effects are extended and maintained.”
Associate Professor White is a Principal Research Fellow at Cancer Council Victoria in Melbourne, Australia.
Read the abstract of the original JCO article.
View the PDF of the original JCO article.
White VM, Young, MA, Farrelly A, et al. Randomized controlled trial of a telephone-based peer support program for women carrying a BRCA1 or BRCA2 mutation: impact on psychological distress. J Clin Oncol. Epub 2014 Nov 10.
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@ 2014 American Society of Clinical Oncology