FAMILY HISTORY OF BREAST-CANCER - WHAT DO WOMEN UNDERSTAND AND RECALLABOUT THEIR GENETIC RISK

The current study has two aims: (1) to look at people's recall of risk information after genetic counselling and (2) to determine the impact of receiving an audiotape of the genetic consultation on level of rec all. cancer related worry, and women's uptake of risk management metho ds. Using a prospective randomised controlled design, subjects receivi ng an audiotape were compared with a standard consultation group. Part icipants were drawn from attenders at the genetic clinics of two Londo n hospitals and included 115 women with a family history of breast can cer. Assessment of perceived genetic risk, mental health, cancer worry , and health behaviour was made before counselling at the clinic (base line) and by postal follow up. Usefulness of audiotapes and satisfacti on with the clinical service was assessed by study specific measures. The data indicate that cancer worry is reduced by provision of an audi otape of the genetic consultation. Recall of the genetic risk figure, however, is not affected by provision of an audiotape and neither is i t related to women's overall perception of being more or less at risk of breast cancer than the average woman. Forty-one percent of women ac curately recalled their personal risk of breast cancer at one month fo llow up; however, 25% overestimated, 11% underestimated, and 23% could not remember or did not know their breast cancer risk. Recall of the risk figure is more accurate when the clinical geneticist has given th is to the woman as an odds ratio rather than in other formats. Subsequ ent health behaviour is unaffected by whether women have an audiotape record of their genetic consultation. Results suggest that having a pr ecise risk figure may be less important than women taking away from th e consultation an impression that something can be offered to help the m manage that risk. Provision of an audiotape of the consultation is o f limited usefulness. The need for psychological care to be better int egrated into genetic counselling at cancer family clinics was highligh ted by the study. The results are discussed in terms of future service development.