Advice on risk of cancer : an evaluation of breast cancer genetic risk counselling services
Professional and public awareness of the hereditary links between family history and breast cancer have resulted in increasing numbers of referrals to regional genetics centres. In a bid to cope with this increasing demand, the appointment of non-medical genetic counsellors with a background in nursing or science, has become commonplace, despite little or no evidence of their effectiveness or acceptability. The aim was to investigate whether genetic nurse counsellors are as effective as current models of service for familial breast cancer counselling, and to explore factors influencing cost-effectiveness. Two randomised controlled trials of equivalence were conducted concurrently in two regional genetics centres. Women who were referred with concerns about a family history of breast cancer were invited to participate and were randomly allocated to genetic counselling delivered by a genetic nurse counsellor (intervention) or a clinical geneticist (control). The primary outcome was patient anxiety, measured using the short form of the STAL the HADS and the mental health and role emotional domains of the SF-36. Acceptability to referring GPs and patients was also assessed. A parallel economic evaluation was conducted. 289 Grampian patients (193 intervention, 96 control) and 297 Wales patients (197 intervention and 100 control) returned a baseline questionnaire and attended. Analysis suggested equivalence in all anxiety scores. No statistically significant differences were detected in other outcomes. The differences in the cost per counselling episode was £10.23 less, 95% (CI-£1.69 to £22.15) for the nurse-based care in the Grampian trial and £10.89 more for nurse-based care in Wales. Care based on nurses was "equivalent" to conventional cancer genetics services across a range of outcomes, and both trial locations. Nurse counselling has the potential to be cost-saving, although the differential costs are sensitive to the grade of doctor (notionally) and the extent of the consultant supervision required by the nurse.