Educational-support groups for BRCA mutation carriers satisfy need for information but do not affect emotional distress.

INTRODUCTION

Due to high cancer risks, women carrying a BRCA 1/2 mutation face a complex choice between breast and ovarian cancer surveillance and prophylactic surgery. The aim of this study is to evaluate educational-support groups, which are offered to facilitate mutual support between BRCA mutation carriers and to provide adequate information.

METHODS

Female BRCA mutation carriers were approached by a social worker after genetic test disclosure and offered participation in educational-support groups. Data regarding emotional well-being, breast cancer risk knowledge and perception, cancer risk management behaviour and family communication were collected both before (T1) and after group participation (T2).

RESULTS

Of the 34 participants, mean levels of negative mood states at T1 were significantly higher compared to those of a norm group (depression p < 0.001, anger p < 0.001, fatigue p = 0.04, tension p = 0.03) and remained high at T2. Self-perceived breast cancer risk and frequency of cancer thoughts were high both at T1 and T2. Breast cancer risk knowledge was accurate both at T1 and T2; women either followed current surveillance advices or obtained prophylactic surgery. Communication with the family of origin was significantly reduced at T2 compared to T1 (p = 0.02). At T2, all women indicated that group participation highly met their needs of BRCA-related information to support their decision-making processes regarding cancer surveillance or prophylactic surgery.

CONCLUSION

After following an educational support group female BRCA mutation carriers were able to make cancer risk management decisions but still reported high levels of emotional distress while family communication appeared diminished.