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

BACKGROUND: Personal and family data forms, completed by women referred to breast cancer genetics clinics, are valuable tools for verification and extension of family history, crucial steps in accurate risk evaluation. A significant minority of women do not complete and return these forms, despite reminders, even when completion is a pre-requisite for a clinic appointment. OBJECTIVE: To facilitate access of women at increased familial risk of breast cancer to screening and counselling services by investigating reasons for non-return of the forms. PARTICIPANTS AND DESIGN: Based on a single regional 'breast cancer family' service in the UK, Analysis of quantitative data comparing women who did not return forms (n = 55) with those who had done so (n = 59), together with qualitative evaluation of potential barriers to form-completion through semi-structured telephone interviews with a random subset of 'non-returners' (n = 23). RESULTS: Non-returners have higher proportions of the very young (below the age at which surveillance could be offered) and of women from lower social deprivation categories. Interviews revealed that the majority of non-returners are anxious, rather than unconcerned about their breast cancer risk and circumstances and attitudes contributed to non-compliance. Twenty-one participants confirmed that they would welcome an appointment at a 'breast cancer family' clinic, but nine did not attend for the appointment. They were significantly younger than those who attend, but were not at lower familial risk. DISCUSSION AND CONCLUSIONS: Many women who fail to complete and return a family history form would benefit from risk assessment and genetic counselling. Several steps are suggested that might help them access the relevant services.

Lifestyle changes in women at genetic risk of breast cancer: an observational study.

BACKGROUND: Lifestyle influences breast cancer risk. Women at increased familial risk may benefit from modifying behaviour, but it is not known to what extent they do so. PURPOSE: This study aims to measure changes that UK (Scottish) women make in response to increased familial risk of breast cancer and attitudes to a risk-reduction trial. METHODS: A questionnaire, completed by 140 "breast cancer family" clinic patients, generated data on habitual diet, alcohol consumption and exercise, changes made after learning of breast cancer risk and attitudes to possible further changes. Subgroups of patients were defined by criteria likely to influence changes in behaviour. Between-group differences were analysed by Fisher's exact test and overall correlations by linear regression. RESULTS: Thirty-six subjects (26 %) reported no behavioural change but, overall, around 25 % of diet, exercise and alcohol items had been changed. Women perceiving their lifetime cancer risk to be high (>50 %) and those who were obese (BMI >25) had made significantly more changes than others. Younger women (<40 years) and those with daughters had made fewer changes. Almost all suggested elements of a risk-reduction trial were strongly supported. CONCLUSIONS: Scottish women at increased risk of breast cancer have scope for protective changes in lifestyle and support a risk-reduction trial. The needs of younger women and of those with daughters should be addressed in its design.

Predicting breast cancer risk: implications of a "weak" family history.

Published guidelines adopted in many countries recommend that women whose family history of breast cancer places them at a risk>or=1.7 times that of the age-matched general population, should be considered for inclusion in special surveillance programmes. However validation of risk assessment models has been called for as a matter of urgency. The databases of the four Scottish Familial Breast Cancer clinics and the Scottish Cancer Registry have been searched to identify breast cancers occurring among 1,125 women aged 40-56, with family histories placing them below the "moderate" level of genetic risk. The observed incidence over 6 years was compared with age-specific data for the Scottish population. Our findings confirm that when there are two affected relatives (one first degree) the relative risk (RR) exceeds 1.7 regardless of their ages at diagnosis. When only one (first degree) relative was affected at any age from 40 to 55, the RR does not reach 1.7 if that relative was a mother but exceeds it if the relative was a sister. The probable explanation is that sisters are more likely than mother/daughter pairs to share homozygosity for a risk allele. Surveillance programmes might therefore accommodate sisters of women affected before age 55. Evidence that "low penetrance" alleles contributing to breast cancer risk may be recessive should be taken into account in strategies for identifying them.

Analysis of referrals to a multi-disciplinary breast cancer genetics clinic: practical and economic considerations.

Analysis of activity was undertaken in an established regional clinic providing risk assessment, counselling, screening and management for women with a family history of breast or ovarian cancer. The objectives were to determine: (1) how closely the route and pattern of referrals matched official guidelines (2) whether the previously recorded socio-economic imbalance among clinic clientele persisted and (3) the economic and practical consequences of committing resources to verification and extension of reported family histories. The findings were: (1) after some years of operation, the proportion of referrals direct from primary care had increased from less than 50% to over 75%, with a concomitant slight decrease in overall referral rate; (2) the socio-economic distribution of patients referred had become less selective and (3) extension and verification of reported family histories led to a redistribution of risk categories, increasing the proportion of referrals judged to be in the "low risk" category, from 25% (based on referral letter alone) to 41% (at the end of the process). The costs associated with this approach are offset by the savings generated and it allows specialised counselling and screening services to be targeted more efficiently.