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CMAJ • September 18, 2001; 165 (6)
© 2001 Canadian Medical Association or its licensors

Letters
Correspondance

Support groups for people carrying a BRCA mutation

Lisa Prospero, Maureen Seminsky, Joanne Honeyford, Brian Doan, Edmee Franssen, Wendy Meschino, Pamela Chart, Ellen Warner and Mary Jane Esplen

(formerly) Division of Medical Oncology Toronto–Sunnybrook Regional Cancer Centre Toronto, Ont.; Division of Medical Oncology Toronto–Sunnybrook Regional Cancer Centre Toronto, Ont.; Department of Clinical Genetics North York General Hospital Toronto, Ont.; Department of Psychology Toronto–Sunnybrook Regional Cancer Centre Toronto, Ont.; Department of Clinical Trials and Epidemiology Toronto–Sunnybrook Regional Cancer Centre Toronto, Ont.; Department of Clinical Genetics North York General Hospital Toronto, Ont.; Head (retired) Preventive Oncology Toronto–Sunnybrook Regional Cancer Centre Toronto, Ont.; Division of Medical Oncology Toronto–Sunnybrook Regional Cancer Centre Toronto, Ont.; Head Psychosocial and Psychotherapy Research in Cancer Genetics Mount Sinai Hospital Toronto, Ont.

We thank Michel Dorval and colleagues for their interest in our study1 and agree with their statement that the majority of people carrying a BRCA1 or BRCA2 mutation do not need support groups. By no means were we trying to suggest that all people carrying one of these mutations should be encouraged to join support groups. Genetic testing populations are heterogeneous and one would not expect a single intervention to address the psychosocial needs of all people carrying a BRCA mutation.

What we did say was that "a significant minority of [people carrying a BRCA mutation] desire such a service." This "significant minority" was 9 of the 24 patients who participated in our study (38%); this is not statistically significantly different from the 27% of people carrying a BRCA mutation in the survey by Dorval and colleagues who expressed moderate or great interest in support groups (p = 0.19, t-test for 2 proportions from independent groups). In another recently published needs assessment of Canadians carrying a BRCA mutation, 68% of women surveyed stated an interest in support groups and 34% said they would participate in a group if given the opportunity.2

Because the group support study by Helgeson and colleagues consisted of women receiving chemotherapy and "harm" was only noted for the physical and not the mental health parameters measured, it is not clear that their findings are relevant to healthy people carrying a BRCA mutation.3 Nevertheless, we acknowledge that there is potential for peer support groups to do harm.

We are currently developing a group therapy model for people carrying a BRCA mutation that involves careful attention to the content as well as the process of delivery, and in-depth training of the group leaders. Each group includes women who have and have not had cancer. Feedback from the participants has been almost universally positive.

References

  1. Di Prospero LS, Seminsky M, Honeyford J, Doan B, Franssen E, Meschino W, et al. Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: Findings from a focus group and a needs assessment survey. CMAJ 2001;164:1005-9.[Abstract/Free Full Text]
  2. Metcalfe KA, Liede A, Hoodfar E, Scott A, Foulkes WD, Narod SA. An evaluation of the needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling. J Med Genet 2000; 37: 866-74.[Abstract/Free Full Text]
  3. Helgeson VS, Cohen S, Schulz R, Yasko J. Group support interventions for women with breast cancer: who benefits from what? Health Psychol 2000;19:107-14.[Medline]



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