A new model of support and information for women / men with a BRCA1/2 gene mutation
Background: Existing support groups for breast cancer patients failed to address the specific needs of unaffected mutation carriers. The Association of Genetic Support of Australasia (AGSA) sought to address this by:
1) Reducing isolation by providing an opportunity to meet other BRCA1/2 gene mutation carriers.
2) Collaborating with professionals to provide current medical information and management options.
3) Continually evaluating and modifying the format based on feedback.
Method: Participation was offered through familial cancer clinics. Both qualitative and quantitative data was collated.
Results: uptake rate of less than 10%. In 2001, 15 participated and in 2005, 51 participated in the annual information days. Of the total 100 attendees, 73 completed evaluations. (73% participation rate). There was a clear preference for an annual information day over a support group. In none of the 73 responses was the feedback on a Likert scale less than 3 (agree) - 5 (strongly agree).
The themes identified included: 1) The need for annual up-to-date medical information in a non-clinical setting, 2) Grief over the loss of mother and other 'significant others',
3) Grief and fear for their children, 4) Fear of discrimination, 5) Needs of men,
6) Decisional conflict, 7) Difficulty with conflicting information on appropriate management.
Discussion: Despite the initial desire for a support group, AGSA, after taking into account the annual evaluations, has developed a new model - a combination of an information day and a classic support group. Further evaluation particularly of the qualitative data is proceeding. Other inherited cancer groups may benefit from similar groups.