Primary care genetics education and clinic location: a cluster randomised trial

Abstract

The rapid growth in genetics knowledge with a subsequent impact on the health of the population has and will continue to increase the demand for NHS clinical genetics services. It has been proposed that general practitioners (GPs) could manage patients at low genetic risk. However, GPs do not have either the knowledge level or the confidence unless support is provided. A primary care genetic counsellor-led clinical genetics service could potentially support GPs in appropriate referral and as emerging NHS policy is planning to shift some specialist services from secondary to primary care settings, would seem a suitable setting for patients, who are not ill, but seek genetic information. This cluster-randomised trial was designed to evaluate the impact of two genetic counsellor-led primary care interventions: education to improve GP referral rates, and clinics to improve the patient pathway. GPs in 73 general practices (clusters) were randomised to receive a case scenario based seminar (intervention) or not (control), and their referred patients to receive a primary (intervention) or secondary (control) care clinic appointment. Outcome measures included GP referral and clinic attendance rates (primary), appropriate cancer and case scenario referral rates, GP referral attitude, clinic waiting times, patient satisfaction, patient and NHS clinic costs and referral case management (secondary). GP overall referral rate was not significantly higher and there was no indication of difference in clinic attendance rates, between groups. GPs from educated practices made significantly more referrals of patients at moderate and high genetic risk, of developing cancer (P=0·035, RRR 2×36, 95% confidence interval 1·07 to 5·24). To attend a primary care clinic appointment cost patients £3·28 less (P=0·000; £3·60 v. 6·62, 95% confidence interval -£4·76 to -£1·79) and 19 minutes less travel time (P=0·000, 95% confidence interval -30·70 to -7·90) than those who attended a clinic appointment in secondary care. More non-cancer than cancer appointments achieved the NHS 13-week clinic waiting time target (P=0·000, 81% v. 19%). 62% of all GP referrals, and 80% of all cancer referrals were entirely managed by genetic counsellors within the 18-week NHS referral to treatment pathway target. This trial has demonstrated that genetic counsellors can 1) provide GP education and improve access to clinical genetics services for individuals at increased cancer genetic risk and, 2) manage both the majority of all patients referred by their GP and those referred with a cancer diagnosis, irrespective of referrer, in a clinic closer to their home than the secondary care clinic and with less patient cost.