The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress

Abstract

There is a lack of formal scientific evidence on how best to manage women with a family history of breast cancer, in terms both of communicating about their risk of developing the disease and of advising about the optimal risk management strategy. It is vital that services offered to these women are adequately evaluated to inform future practice. This paper reports data from an ongoing longitudinal study of the knowledge, attitudes and behavioural and emotional responses of women attending a familial breast cancer clinic in SE Scotland. The clinic was established in 1992, and at that time there were no published psychological data available from the small number of similar clinics in the UK. We were aware of the subsequently published assessments from Manchester of womenÕs perceptions of their risk of developing breast cancer (Evans et al, 1993(Evans et al, , 1994. The same method of assessing risk perceptions was therefore adopted in this study. In spite of a subsequent proliferation of cancer risk counselling clinics there has remained a dearth of published reports evaluating the services offered.The concerns when our clinic opened were that the women seeking referral would be characterized by high anxiety and not necessarily at significantly increased risk. A further concern was that the process of counselling about cancer risk would be anxiety provoking, particularly for those who would be told that their risk was greater than they had previously thought. In the current state of knowledge, the information that can be given about individual risk and the efficacy of available risk management strategies is highly probabilistic. It was recognized that this uncertainty could also generate anxiety. Key issues were therefore to assess womenÕs perceptions of their risk of developing breast cancer and the psychological morbidity associated with cancer risk counselling.This study was conducted against a background of data accruing from the US to show a substantial proportion of women with a family history of breast cancer with significant levels of psychological distress (Kash et al, 1992) and gross overestimates of their own cancer risk (Lerman et al, 1994a;Gagnon et al, 1996) even after risk counselling (Lerman et al, 1995). High levels of perceived susceptibility and associated anxiety have been shown to interfere with adherence to recommended surveillance programmes (Kash et al, 1992;Lerman et al, 1993). The concern has also been expressed that some women will deal with their concerns by making ill-considered requests for genetic testing or prophylactic surgery (Lerman et al, 1994b). In the UK, Lloyd et al (1996) compared 62 genetic counsellees (with a family history of breast cancer) with a matched group of attenders at a general practitionerÕs (GP) surgery. They found these two groups of women to be similar in terms of the outcome measures used and concluded that the risk of breast cancer was not predictive of psychological morbidity. In this study, risk perceptions were recorded before counselling, but 58% of t...

Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials

“…After genetic counselling, small reductions in anxiety levels were seen in all groups. Even though the participants' baseline mean anxiety scores were slightly higher than the norm for adult women (score of 35), they were comparable to anxiety levels found in other studies that have used the STAI (Cull et al, 1998;Cull et al, 1999;Julian-Reynier et al, 1999;Brain et al, 2000). The between-trial differences support the decision to conduct two parallel trials rather than multicentre trial, where the data would have been pooled (Bowling, 1997).…”

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.…”

Changes in psychological distress after cancer genetic counselling: a comparison of affected and unaffected women

“…Some studies in the UK and USA have found that levels of anxiety and general distress among women at risk are higher than those found in the general population (e.g. Cull et al, 1999;Valdimarsdottir et al, 1995) although no higher than among women attending for screening.…”

“…Women attending for genetic counselling are given information about risk and surveillance behaviours and also possible genetic testing. Women who are distressed may fail to take in this information (Hopwood et al, 1998;Cull et al, 1999) and act on it appropriately (Lerman et al, 1995). In addition, high anxiety may diminish women's willingness to participate in screening and surveillance (Kash et al, 1992;Lerman et al, 1993) or lead to excessive self examination (Brain et al, 1999).…”