Exploring the acceptability of, and preferences for, an ongoing support network for known BRCA1 and BRCA2 mutation carriers

Background

There is increasing concern that the longer-term psychological and information needs of individuals found to carry genetic mutations predisposing them to an increased risk of developing breast/ovarian cancer are not being met. The present study sought to explore preferences for an ongoing support network for mutation carriers.

Methods

Sixteen female BRCA1/2 mutation carriers within the All Wales Medical Genetics Service attended one of three focus groups. A topic guide was used to explore patients' current and ongoing information and psychological support needs, and preferences for the content, nature and format of support group or network. Data were transcribed and thematically analysed.

Results

The results reflected a diverse range of experiences amongst participants. Many patients reported adequate support from the genetic service both upon receipt of test results and in the longer term, whilst others were not aware that ongoing support was available. Many participants believed they and family members would benefit from increased psychological support and information. General consensus was reached that a support network, incorporating elements including a traditional support group alongside matching schemes, web-based chat forums and professionalled workshops, would be the best approach. It was felt important that such an initiative should have professional input.

Conclusion

The data will inform the development of an appropriate support network for mutation carriers to help them adapt to living with their genetic risk and cope with their worries for themselves and family. The results of the study will also inform the development of similar support networks for other at-risk patients.