Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators

The number of women in the UK seeking genetic counselling, testing and preventative treatment is rapidly increasing. In Manchester 600-800 women are now referred annually to the Family History Clinic. As yet there is no formal provision for this service within the NHS, but research is underway to evaluate such clinics and to identify the psychosocial sequelae of genetic risk counselling. To date, findings have been based on questionnaire data from which it is difficult to ascertain support needs accurately. We interviewed 158 women 3 months after genetic risk counselling because of a family history of breast cancer. Using standard assessment and diagnostic criteria, 21 (13%) women were diagnosed with an affective disorder. This compared with a prevalence of 26% using the 28 item General Health Questionnaire (GHQ). We did not find a relationship between GHQ distress levels and women's understanding of their risk before genetic counselling, but women with accurate risk knowledge post-counsel had significantly lower GHQ scores than those who continued to over or under-estimate and this finding warrants further investigation. Of women referred for psychological help, few reported risk of breast cancer as their main concern, but themes of loss, unresolved grief and relationship problems were common. The value of the GHQ as a screening instrument is discussed and we suggest a new threshold value based on our analysis. We conclude that risk counselling does not adversely affect the general mental health of attenders but a minority of women may need help with the impact of breast cancer in the family.