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

@entity1 @entity308 @entity5344 @entity0 @entity5 @entity5345 @entity6069
INTRODUCTION: Due to high @entity5 risks, @entity1 carrying a @entity6069 mutation face a complex choice between @entity5344 surveillance and prophylactic surgery. The aim of this study is to evaluate educational-support groups, which are offered to facilitate mutual support between @entity5345 mutation carriers and to provide adequate information. METHODS: Female @entity5345 mutation carriers were approached by a social worker after genetic test disclosure and offered participation in educational-support groups. Data regarding emotional well-being, @entity0 risk knowledge and perception, @entity5 risk management behaviour and family communication were collected both before (T1) and after group participation (T2). RESULTS: Of the 34 @entity1 , mean levels of negative mood states at T1 were significantly higher compared to those of a norm group ( @entity308 p < 0.001, anger p < 0.001, fatigue p = 0.04, tension p = 0.03) and remained high at T2. Self-perceived @entity0 risk and frequency of @entity5 thoughts were high both at T1 and T2. @entity0 risk knowledge was accurate both at T1 and T2; @entity1 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 @entity1 indicated that group participation highly met their needs of @entity5345 -related information to support their decision-making processes regarding @entity5 surveillance or prophylactic surgery. CONCLUSION: After following an educational support group female @entity5345 mutation carriers were able to make @entity5 risk management decisions but still reported high levels of emotional distress while family communication appeared diminished.
