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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

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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.

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Acknowledgements

We are grateful to the Department of Health and Macmillan Cancer Support for funding this project. We are also very grateful to the patients and users of the service for their participation, and to the GPs and Consultant colleagues who participated in the project: Dr. I. Rafi, Dr. R. Savage.

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Authors and Affiliations

  1. Clinical Genetics Department, St. George’s Hospital Medical School, St. George’s Hospital NHS Trust, South West Thames Regional Genetics Service, Jenner Wing, Cranmer Terrace, London, SW17 0RE, UK

    Zohra Gulzar, Sheila Goff, Heather Hearty, Imran Rafi, Julie Ferras & Shirley Hodgson

  2. N.W. Thames Regional Genetics Centre, Harrow, HA1 3UJ, UK

    Albert Njindou

  3. Falcon Road Medical Practice, 47 Falcon Road, London, SW11 2PH, UK

    Rosie Savage

  4. N.E. Thames Regional Genetics Centre, Institute of Child Health, London, WC1N 1EH, UK

    Gaya Matta

Authors
  1. Zohra Gulzar
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  2. Sheila Goff
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  3. Albert Njindou
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  4. Heather Hearty
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  5. Imran Rafi
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  6. Rosie Savage
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  7. Gaya Matta
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  8. Julie Ferras
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  9. Shirley Hodgson
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Corresponding author

Correspondence to Shirley Hodgson.

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Gulzar, Z., Goff, S., Njindou, A. et al. 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. Familial Cancer 6, 205–212 (2007). https://doi.org/10.1007/s10689-007-9128-x

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  • DOI: https://doi.org/10.1007/s10689-007-9128-x

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