title: Nurse-led cancer genetics clinics in primary and secondary care in varied ethnic population areas: interaction with primary care to improve ascertainment of individuals from ethnic minorities.
abstract: Genetic services are receiving increasing numbers of referrals of people with a family history of cancer for assessment of genetic risk, and therefore need to find cost-effective ways of meeting this rising demand. General Practitioners (GPs) are known to be reluctant to take on genetic consultations. Current evidence suggests that black and ethnic minorities are poorly represented in cancer genetics clinics. Nurse-led clinics in primary care have been found to be successful. This paper reports a pilot study to test the feasibility, accessibility, and effectiveness of providing cancer genetics nurse-counsellor clinics in primary and secondary care in the SW Thames Region. We initially set up three nurse-led clinics in general practices and two in district hospitals with very different ethnic catchment areas. The service was advertised by displaying posters and leaflets, translated into different languages. Self-referrals were encouraged. We set up a user involvement sub-group and held two focus group meetings to assess barriers to, and satisfaction with, the service. A patient satisfaction questionnaire was designed and administered after the appointments. We also designed a GP satisfaction survey regarding the service. Data on referrals, including their source and outcome, were recorded on a purpose-designed study database. We received increasing numbers of referrals to all clinics over the course of the pilot. Of 137 referrals, 23 (17%) were from ethnic minorities, of whom 17/23 (74%) were self-referred, compared with 102 British White referrals, of whom 91/102 (89%) were self-referred. Sixty-two patients (45%) were assessed to be at population risk and reassured, 60 (44%) were at moderate risk, and 15 (11%) were at high risk and were referred on for appropriate management. These proportions were similar for black and ethnic minority patients. Most patients reported high satisfaction with the service.
authors.affiliation: Clinical Genetics Department, St. George's Hospital Medical School, St. Georges Hospital NHS Trust, South West Thames Regional Genetics Service, Jenner Wing, Cranmer Terrace, London, SW17 0RE, UK.
authors.forename: Zohra
authors.initials: Z
authors.lastname: Gulzar
authors.forename: Sheila
authors.initials: S
authors.lastname: Goff
authors.forename: Albert
authors.initials: A
authors.lastname: Njindou
authors.forename: Heather
authors.initials: H
authors.lastname: Hearty
authors.forename: Imran
authors.initials: I
authors.lastname: Rafi
authors.forename: Rosie
authors.initials: R
authors.lastname: Savage
authors.forename: Gaya
authors.initials: G
authors.lastname: Matta
authors.forename: Julie
authors.initials: J
authors.lastname: Ferras
authors.forename: Shirley
authors.initials: S
authors.lastname: Hodgson
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003695:Delivery of Health Care / Q000379:methods; D005260:Female; D033142:Genetic Services / Q000458:organization & administration* / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D008875:Middle Aged; D008913:Minority Groups; D009313:National Health Programs; D009369:Neoplasms / Q000235:genetics*; D009726:Nurses; D017060:Patient Satisfaction; D011320:Primary Health Care; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D006113:United Kingdom