Familial breast cancer: management of ‘lower risk’ referrals

Abstract

Up to 40% of referrals from primary care to 'breast cancer family clinics' prove to be of women whose assessed risk falls below the guidelines' threshold for management in secondary or tertiary care, despite recommendations that they should be screened out at primary care level. A randomised trial, involving 87 such women referred to the Tayside Familial Breast Cancer Service compared two ways of communicating risk information, letter or personal interview. Both were found to be acceptable to referred women and to their family doctors, although the former expressed a slight preference for interview. Only four women returned to their family doctors with continuing concerns about breast cancer. Nevertheless, understanding of information provided by either route was unsatisfactory, with apparent confusion about both absolute and relative risks of breast cancer. Substantial minorities appear to believe that they are at no increased risk at all, or even below the population level of risk, while others remain convinced that their personal risk has been underestimated. Family history record forms, completed by the referred women, preferably with the assistance of relatives, are crucial to full assessment of familial risk but one quarter of women referred to the Tayside Familial Breast Cancer Service currently do not complete and return these forms ahead of their clinic appointment. Further collaboration between primary care and the Breast Cancer Family Service is required to improve provision for concerned women whose risks fall below the threshold for special surveillance and to maximise effective use of the family history record form.

How Risk is Perceived, Constructed and Interpreted by Clients in Clinical Genetics, and the Effects on Decision Making: Systematic Review

“…In a systematic review looking at the uptake of genetic testing and coping strategies of cancer patients, anxiety levels were found to be higher among those who decline to be tested than those receiving genetic test results, either positive or negative, offering an explanation as to why some people may choose not to undergo testing, i.e., as a coping mechanism through avoidance (Case et al 2005). There is also evidence in the wider literature that some individuals found to be at low or average risk resent exclusion from surveillance programs (Young et al 2006) and want their objective risk 'increased' so as to be eligible for screening (Scott et al 2005), supporting some of the evidence in this review. However, and perhaps more reflective of the findings of our review, a meta-analysis of predictors of perceived breast cancer risk and the relationship between perceived risk and breast cancer screening, concluded that it is unclear whether perceived risk influences adherence to BSE (Katapodi et al 2004).…”

“I have always believed I was at high risk…” The role of expectation in emotional responses to the receipt of an average, moderate or high cancer genetic risk assessment result: a thematic analysis of free-text questionnaire comments

“…Similar free-text comments from women at average risk of familial breast cancer are reported by Young et al [20]. Other research has shown that before genetic counselling some women with a family history of breast cancer regarded cancer as an inevitable outcome [17,21].…”

Why do women not return family history forms when referred to breast cancer genetics services? A mixed‐method study

“…Around one in four women referred to a breast cancer genetics clinic in the UK do not return their Family History form . These forms, which tabulate information to generate a three‐generation family tree, together with details (site, age of onset and outcome) of any cancers (particularly of breast and ovary) that have occurred among family members are widely used in the practice of breast cancer genetics .…”

“…Analysis of completed family history forms often serves as the ‘gateway’ to these services . Some centres have made completion and return of the form a condition of access to the breast cancer family clinic and women who do not comply, after a reminder letter, are referred back to primary care …”

“…Family history forms have been used since the outset, but until 2005, all women referred were seen at the clinic even if they had not returned a completed form. It became apparent that around one quarter of referred women did not return the form in advance of their appointment, although some brought it with them when they attended the clinic . An important purpose of the form is to enable the genetics staff to evaluate the woman's risk as accurately as possible by interrogating the Scottish cancer registry and public records of births, marriages and deaths before her first clinic visit (this being the best opportunity for individual risk and its management to be discussed in depth).…”