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

open access:
Why do women not return family history forms when referred to breast cancer genetics services? A mixed-method study (UK)
 

Conclusions

Both qualitative and quantitative findings from this study clearly identify changes that should be made to our clinic procedures although there is a need to confirm the findings with a larger sample of participants. These include redesign of the family history form, making it easier to complete, clarifying its purpose and more explicitly relieving respondents of responsibility for information that is difficult to obtain; preparing (perhaps as a ‘frequently asked questions’ leaflet) a comprehensive account of what a family history clinic visit entails, including the information that mothers can bring young children with them; making that leaflet available at the sources of referral (primary care and symptomatic breast clinics) in addition to including it with the family history form when the family history service responds to a referral; greater use of telephone contacts, particularly for those under age 35 and/or from socially deprived backgrounds, and closer liaison with primary care when someone referred does not complete and return the family history form. Continued monitoring of the rate of ‘non-return’ of the revised forms should establish the success or otherwise of these measures and perhaps their applicability to cancer genetics services generally.

Evaluation of familial risk will be an increasing element of oncological practice, so this study's experience and findings may serve as a reference in other contexts.