A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics

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 attend...

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Bibliographic Details
Published in:British journal of cancer 2001-07, Vol.85 (2), p.166-170
Main Authors: Wonderling, D, Hopwood, P, Cull, A, Douglas, F, Watson, M, Burn, J, McPherson, K
Format: Article
Language:English
Subjects:
Biological and medical sciences
Biomedical and Life Sciences
Biomedicine
Cancer Research
Counseling
Drug Resistance
Epidemiology
Family medical history
Genetic Counseling - organization & administration
Genetic Counseling - standards
Genetic testing
Genetics
Guidelines as Topic
Health and social institutions
Health Services Accessibility
Hospitals
Humans
Mammography
Medical referrals
Medical research
Medical sciences
Medical screening
Molecular Medicine
Neoplasms - genetics
Oncology
Organization
Primary care
Public health. Hygiene
Public health. Hygiene-occupational medicine
Regions
Regular
regular-article
Risk Management
Surgeons
Surveillance
United Kingdom
Working groups
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Summary: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
ISSN:0007-0920
1532-1827
DOI:10.1054/bjoc.2001.1893