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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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Autores principales: Wonderling, D, Hopwood, P, Cull, A, Douglas, F, Watson, M, Burn, J, McPherson, K
Formato: Texto
Lenguaje:English
Publicado: Nature Publishing Group 2001
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2364036/
https://www.ncbi.nlm.nih.gov/pubmed/11461071
http://dx.doi.org/10.1054/bjoc.2001.1893
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author Wonderling, D
Hopwood, P
Cull, A
Douglas, F
Watson, M
Burn, J
McPherson, K
author_facet Wonderling, D
Hopwood, P
Cull, A
Douglas, F
Watson, M
Burn, J
McPherson, K
author_sort Wonderling, D
collection PubMed
description 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. © 2001 Cancer Research Campaign http://www.bjcancer.com
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spelling pubmed-23640362009-09-10 A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics Wonderling, D Hopwood, P Cull, A Douglas, F Watson, M Burn, J McPherson, K Br J Cancer Regular Article 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. © 2001 Cancer Research Campaign http://www.bjcancer.com Nature Publishing Group 2001-07 /pmc/articles/PMC2364036/ /pubmed/11461071 http://dx.doi.org/10.1054/bjoc.2001.1893 Text en Copyright © 2001 Cancer Research Campaign https://creativecommons.org/licenses/by/4.0/This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material.If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/.
spellingShingle Regular Article
Wonderling, D
Hopwood, P
Cull, A
Douglas, F
Watson, M
Burn, J
McPherson, K
A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics
title A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics
title_full A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics
title_fullStr A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics
title_full_unstemmed A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics
title_short A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics
title_sort descriptive study of uk cancer genetics services: an emerging clinical response to the new genetics
topic Regular Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2364036/
https://www.ncbi.nlm.nih.gov/pubmed/11461071
http://dx.doi.org/10.1054/bjoc.2001.1893
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