Improving the referral process for familial breast cancer genetic counselling: findings of three randomised controlled trials of two interventions

• Published in: Health technology assessment (Winchester, England) England), 2005-02, Vol.9 (3), p.iii-iv
• Main Authors: Wilson, B J, Torrance, N, Mollison, J, Wordsworth, S, Gray, J R, Haites, N E, Grant, A, Campbell, M K, Miedyzbrodzka, Z, Clarke, A, Watson, M S, Douglas, A
• Format: Article
• Language: English
• Subjects: Breast Neoplasms - genetics; Cost-Benefit Analysis; Family Practice - organization & administration; Female; Genetic Counseling; Genetic Testing; Humans; Practice Guidelines as Topic; Referral and Consultation - standards; United Kingdom
• ISSN: 1366-5278; 2046-4924; 1366-5278
• DOI: 10.3310/hta9030

To evaluate the effectiveness and cost-effectiveness of two complementary interventions, using familial breast cancer as a model condition. The primary care intervention consisted of providing computerised referral guidelines and related education to GPs. The nurse counsellor intervention evaluated genetic nurses as substitutes for specialist geneticists in the initial assessment and management of referred patients. The computerised referral guidelines study was a pragmatic, cluster randomised controlled trial (RCT) with general practices randomised to intervention or control groups. The nurse counsellor intervention was tested in two concurrent RCTs conducted in separate UK health service locations, using predetermined definitions of equivalence. The computerised referral guidelines trial took place in general practices in Scotland from November 2000 to June 2001. The nurse counsellor intervention took place in a regional genetics clinic in Scotland, and in two health authorities in Wales served by a single genetics service during 2001. The computerised referral guidelines study involved GPs and referred patients. Both nurse counsellor intervention trials included women referred for the first time, aged 18 years or over and whose main concern was family history of breast cancer. The software system was developed with GPs, presenting cancer genetic referral guidelines in a checklist approach. Intervention GPs were invited to postgraduate update education sessions, and both intervention and control practices received paper-based guidelines. The intervention period was November 2000 to June 2001. For the nurse counsellor trial, trial 1 ran outpatient sessions with the same appointment length as the standard service offered by geneticists, but the nurse counsellor saw new patients at the first appointment and referred back to the GP or on to a clinical geneticist according to locally developed protocol, under the supervision of a consultant geneticist. The control intervention was the current service, which comprised an initial and a follow-up appointment with a clinical geneticist. In trial 2, a nurse counsellor ran outpatient sessions with the same appointment length as the new consultant-based cancer genetics service and new patients were seen at the first appointment and referred as in trial 1. The control intervention was a new service, and comprised collection of family history by telephone followed by a consultation with a clinical assistant or a speci