Abstract
The objective was to describe NHS cancer genetic counselling services and compare UK regions. The study design was a cross-sectional study over 4 weeks and attendee survey. The setting was 22 of the 24 regional cancer genetics services in the UK NHS. Participants were individuals aged over 18 attending clinics at these services. Outcome measures were staff levels, referral rates, consultation rates, follow-up plans, waiting time. There were only 11 dedicated cancer geneticists across the 22 centres. Referrals were mainly concerned with breast (63%), bowel (18%) and ovarian (12%) cancers. Only 7% of referrals were for men and 3% were for individuals from ethnic minorities. Referral rates varied from 76 to 410 per million per annum across the regions. Median waiting time for an initial appointment was 19 weeks, ranging across regions from 4 to 53 weeks. Individuals at population-level genetic risk accounted for 27% of consultations (range 0%, 58%). Shortfalls in cancer genetics staff and in the provision of genetic testing and cancer surveillance have resulted in large regional variations in access to care. Initiatives to disseminate referral and management guidelines to cancer units and primary care should be adequately resourced so that clinical genetics teams can focus on the genetic testing and management of high-risk families. www.bjcancer.com © 2001 Cancer Research Campaign
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References
Brain K (2000) Randomized trial of a specialist genetic assessment service for familial breast cancer. J Natl Cancer Inst 92: 1345–1351
de Bock GH, van Asperen CJ, de Vries JM, Hageman CHA, Springer MP and Kievit J (2001) How women with a family history of breast cancer and their general practitioners act on genetic advice in general practice: prospective longitudinal study. BMJ 7277: 26–27
Eeles RA and Murday VA (1996) The cancer family clinic. Eeles RA, Ponder BAJ, Easton DF, Horwich A (eds). Genetic Predisposition to Cancer, London, Chapman & Hall
Emery J, Walton R, Coulson A, Glasspool D, Ziebland S and Fox J (1999) Computer support for recording and interpreting family histories of breast and ovarian cancer in primary care (RAGs): qualitative evaluation with simulated patients. BMJ 319: 32–36
Emery J, Walton R, Murphy M, Austoker J, Yudkin P, Chapman C, Coulson A, Glasspool D and Fox J (2000) Computer support for interpreting family histories of breast and ovarian cancer in primary care: comparative study with simulated cases. BMJ 321: 28–32
Expert Advisory Group on Cancer (1995). A policy framework for commissioning cancer services, London, Department of Health and Welsh Office
Hodgson S, Milner B, Brown I, Bevilacqua G and Chang-Claude J (1999) Cancer genetics services in Europe. Disease Markers 15: 3–13
Leggatt V, Mackay J and Yates JRW (1999) Evaluation of a questionnaire on cancer family history in identifying patients at increased genetic risk in general practice. BMJ 319: 757–758
Morrison PJ and Nevin NC (1999) Cancer genetics Services in Northern Ireland. Disease Markers 15: 37–40
Moynihan C (1998) Theories in health care research: Theories of Masculinity. BMJ 317: 1072–1075
Murday V (1994) Genetic counselling in the cancer family clinic. European Journal of Cancer 30A: 2012–2015
NHS Executive (2000). The NHS Cancer Plan, London, Department of Health
Peshkin BN and Lerman C (1999) Genetic counselling for hereditary breast cancer. The Lancet 353: 2176–2177
Ponder BAJ (1994) Setting up and running a familial cancer clinic. British Medical Bulletin 50: 732–745
Priority Areas Cancer Team (1998). Cancer Genetics Services in Scotland, Edinburgh, The Scottish Office, Department of Health
Sobol H, Bignon Y-J, Bonaiti C, Cuisenier J and Lasset C (1999) Four year analysis of cancer genetic clinics activity in France from 1994 to 1997: A survey on 801 patients. Disease Markers 15: 15–29
Thompson JA (1995) Genetics services for familial cancer patients: A survey of National Cancer Institute cancer centres. J Natl Cancer Inst 87: 1446–1455
Warner E, Foulkes W, Goodwin P, Meschino W, Blondal J, Paterson C, Ozcelik H, Goss P, Allingham-Hawkins D, Hamel N, Di-Prospero L, Contiga V, Serruya C, Klein M, Moslehi R, Honeyford J, Liede A, Glendon G, Brunet JS and Narod S (1999) Prevalence and penetrance of BRCA1 and BRCA2 gene mutations in unselected Ashkenazi Jewish women with breast cancer. J Natl Cancer Inst 91: 1241–1247
Working Group for the Chief Medical Officer (1998) Genetics and cancer services. Report of a Working Group for the Chief Medical officer, Department of Health, London, Department of Health
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Wonderling, D., Hopwood, P., Cull, A. et al. A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics. Br J Cancer 85, 166–170 (2001). https://doi.org/10.1054/bjoc.2001.1893
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DOI: https://doi.org/10.1054/bjoc.2001.1893