Family history of breast cancer: what do women understand and recall about their genetic risk?

Abstract

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 ofreceiving an audiotape ofthe genetic consultation on level of recall, cancer related worry, and women's uptake of risk management methods.Using a prospective randomised controlled design, subjects receiving an audiotape were compared with a standard consultation group. Participants were drawn from attenders at the genetic clinics of two London hospitals and included 115 women with a family history of breast cancer.Assessment of perceived genetic risk, mental health, cancer worry, and health behaviour was made before counselling at the clinic (baseline) and by postal follow up. Usefulness of audiotapes and satisfaction with the clinical service was assessed by study specific measures.The data indicate that cancer worry is reduced by provision of an audiotape of the genetic consultation. Recall of the genetic risk figure, however, is not affected by provision ofan audiotape and neither is it 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 accurately recalled their personal risk of breast cancer at one month follow up; however, 25% overestimated, 11% underestimated, and 23%could not remember or did not know their breast cancer risk. Recall ofthe risk figure is more accurate when the clinical geneticist has given this to the woman as an odds ratio rather than in other formats. Subsequent health behaviour is unaffected by whether women have an audiotape record of their genetic consultation.Results suggest that having a precise risk figure may be less important than women taking away from the consultation an impression that something can be offered to help them manage that risk. Provision of an audiotape of the consultation is of limited usefulness. The need for psychological care to be better integrated into genetic counselling at cancer family clinics was highlighted by the study. The results are discussed in terms of future service development. (7Med Genet 1998;35:731-738)

The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer

“…However, a single genetic counselling consultation may not be sufficient to shift these worries in some women and it might be unreasonable to expect otherwise. General levels of psychological morbidity (GHQ) remain unaffected by genetic counselling and are consistent with those previously reported elsewhere in the literature (Watson et al, 1998).…”

Familial breast cancer: management of ‘lower risk’ referrals

“…The discrepancies between two alternative ways of presenting that information may suggest a lack of clarity in the questions or difficulties with numerical notation. Communication of risk in the setting of a breast cancer family clinic is well recognised as a problem area, with no method of communication proven to achieve accurate understanding (Watson et al, 1998;Cull et al, 1999;Braithwaite et al, 2004;Lobb et al, 2005). Furthermore, the free text comments from a number of respondents showed that, despite scrupulous avoidance of the term 'low risk' in oral and written communications from the clinic, some feel inappropriately reassured, to the extent of believing their risk may be below that of the general population.…”

Patient satisfaction with two different models of cancer genetic services in south-east Scotland

“…Other measures Psychological distress and cancer worry were measured at baseline by the General Health Questionnaire (GHQ 30) (Goldberg and Williams, 1988) and the Cancer Worry Scale (Watson et al, 1998) as described by Fry et al (2003).…”