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Referrals of patients to colorectal cancer genetics services in south-east Scotland

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Abstract

The discovery that genetic factors are involved in the aetiology of colorectal cancer, has prompted many relatives of affected individuals to seek genetic counselling and screening. This paper describes the demand for genetic services by families with colorectal cancer in south-east Scotland, their expectations and views of the service offered. The annual referral rate over the 21-month study period, for patients with a family history of colorectal cancer, was 0.11 per 1000 patients on general practitioner lists. This is one third of the rate for patients with a family history of breast cancer and in comparison with the breast cancer group, relatives of colorectal cancer patients were significantly older and less socially deprived. Approximately one third were referred via a hospital specialist unit. One hundred patients were included in the study. Mean (± standard deviation) age was 43 (± 10.7 years), 75 were female and 31 were self referrals. Before the consultation, almost half the patients had an inflated perception of their risk and there was little change at follow-up. There was an improvement in objective understanding after counselling which was sustained up to 6 months but only two thirds remembered their objective risk accurately. Most patients were satisfied with the consultation. Our findings suggest the need to educate individuals, in particular men, younger people and the more socially deprived, about the relevance of a family history of colorectal cancer and to facilitate patients’ comprehension of their risk status.

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References

  1. JD Trimbath FM. Giardiello (2002) ArticleTitleReview article: genetic testing and counselling for hereditary colorectal cancer Aliment Pharmacol Ther 16 1843–57 Occurrence Handle10.1046/j.1365-2036.2002.01357.x Occurrence Handle1:STN:280:DC%2BD38njt1Smsg%3D%3D Occurrence Handle12390093

    Article  CAS  PubMed  Google Scholar 

  2. GM Petersen JD Brensinger KA Johnson FM. Giardiello (1999) ArticleTitleGenetic testing and counseling for hereditary forms of colorectal cancer Cancer 86 IssueID11 Suppl 2540–50 Occurrence Handle10.1002/(SICI)1097-0142(19991201)86:11+<2540::AID-CNCR11>3.0.CO;2-8 Occurrence Handle1:STN:280:DC%2BD3c%2FpsFKntg%3D%3D Occurrence Handle10630180

    Article  CAS  PubMed  Google Scholar 

  3. D Wonderling P Hopwood A Cull et al. (2001) ArticleTitleA descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics Br J Cancer 85 166–70 Occurrence Handle10.1054/bjoc.2001.1893 Occurrence Handle1:STN:280:DC%2BD3MvhtF2qtA%3D%3D Occurrence Handle11461071

    Article  CAS  PubMed  Google Scholar 

  4. K Aktan-Collan A Haukkala JP Mecklin et al. (2001) ArticleTitleComprehension of cancer risk one and 12 months after predictive genetic testing for hereditary non-polyposis colorectal cancer J Med Genet 38 787–92 Occurrence Handle10.1136/jmg.38.11.787 Occurrence Handle1:STN:280:DC%2BD3MnosFyitA%3D%3D Occurrence Handle11732490

    Article  CAS  PubMed  Google Scholar 

  5. MJ Esplen L Madlensky K Butler et al. (2001) ArticleTitleMotivations and psychosocial impact of genetic testing for HNPCC Am J Med Genet 103 9–15 Occurrence Handle10.1002/ajmg.1493 Occurrence Handle1:STN:280:DC%2BD3MrhtlKnuw%3D%3D Occurrence Handle11562928

    Article  CAS  PubMed  Google Scholar 

  6. AY Kinney BM DeVellis C Skrzynia R. Millikan (2001) ArticleTitleGenetic testing for colorectal carcinoma susceptibility: focus group responses of individuals with colorectal carcinoma and first-degree relatives Cancer 91 57–65 Occurrence Handle10.1002/1097-0142(20010101)91:1<57::AID-CNCR8>3.0.CO;2-U Occurrence Handle1:STN:280:DC%2BD38%2Fgs1Sluw%3D%3D Occurrence Handle11148560

    Article  CAS  PubMed  Google Scholar 

  7. DW Hadley J Jenkins E Dimond et al. (2003) ArticleTitleGenetic counselling and testing in families with hereditary non polyposis colorectal cancer Arch Intern Med 163 573–82 Occurrence Handle10.1001/archinte.163.5.573 Occurrence Handle12622604

    Article  PubMed  Google Scholar 

  8. V Collins J Halliday R Warren R. Williamson (2000) ArticleTitleAssessment of education and counselling offered by a familial colorectal cancer clinic Clin Genet 57 48–55 Occurrence Handle10.1034/j.1399-0004.2000.570107.x Occurrence Handle1:STN:280:DC%2BD3c7psFeksQ%3D%3D Occurrence Handle10733235

    Article  CAS  PubMed  Google Scholar 

  9. V Collins J Halliday R Warren R. Williamson (2000) ArticleTitleCancer worries, risk perceptions and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinic Clin Genet 58 460–8 Occurrence Handle10.1034/j.1399-0004.2000.580606.x Occurrence Handle1:STN:280:DC%2BD3M7isVWmtg%3D%3D Occurrence Handle11149615

    Article  CAS  PubMed  Google Scholar 

  10. C Julian-Reynier F Eisinger F Chabal et al. (1996) ArticleTitleCancer genetics clinics: target population and consultees expectations Eur J Cancer 32 398–403 Occurrence Handle10.1016/0959-8049(95)00601-X

    Article  Google Scholar 

  11. K Nordin A Lidén M Hansson et al. (2002) ArticleTitleCoping style, psychological distress, risk perception, and satisfaction in subjects attending genetic counselling for hereditary cancer J Med Genet 39 689–94 Occurrence Handle10.1136/jmg.39.9.689 Occurrence Handle1:STN:280:DC%2BD38vkvVWqtw%3D%3D Occurrence Handle12205115

    Article  CAS  PubMed  Google Scholar 

  12. A Fry A Cull S Appleton et al. (2003) ArticleTitleA randomised controlled trial of breast cancer genetic services in South East Scotland: psychological impact Br J Cancer 89 653–9 Occurrence Handle10.1038/sj.bjc.6601170 Occurrence Handle1:STN:280:DC%2BD3sznvFWiuw%3D%3D Occurrence Handle12915873

    Article  CAS  PubMed  Google Scholar 

  13. H Campbell S Holloway R Cetnarskyj et al. (2003) ArticleTitleReferrals of women with a family history of breast cancer from primary care to cancer genetic services in SE Scotland Br J Cancer 89 1650–6 Occurrence Handle10.1038/sj.bjc.6601348 Occurrence Handle1:STN:280:DC%2BD3srgs1Grtg%3D%3D Occurrence Handle14583764

    Article  CAS  PubMed  Google Scholar 

  14. S Holloway M Porteous R Cetnarskyj et al. (2004) ArticleTitlePatient satisfaction with two different models of cancer genetic services in South-East Scotland Br J Cancer 90 582–9 Occurrence Handle10.1038/sj.bjc.6601562 Occurrence Handle1:STN:280:DC%2BD2c%2FlvVCgtw%3D%3D Occurrence Handle14760368

    Article  CAS  PubMed  Google Scholar 

  15. Cancer Genetics (A public information leaflet). Cancer Research Campaign, 1997.

  16. V Carstairs R. Morris (1990) ArticleTitleDeprivation and health in Scotland Health Bull 48 162–75 Occurrence Handle1:STN:280:By%2BA28fjsVI%3D

    CAS  Google Scholar 

  17. M Watson V Duvivier M Wade Walsh et al. (1998) ArticleTitleFamily history of breast cancer: what do women understand and recall about their genetic risk? J Med Genet 35 731–8 Occurrence Handle1:STN:280:DyaK1cvgtFyltQ%3D%3D Occurrence Handle9733031

    CAS  PubMed  Google Scholar 

  18. C Lerman B Trock BK Rimer et al. (1991) ArticleTitlePsychological side effects of breast cancer screening Health Psychol 10 259–67 Occurrence Handle10.1037//0278-6133.10.4.259 Occurrence Handle1:STN:280:By2D3cjmsVw%3D Occurrence Handle1915212

    Article  CAS  PubMed  Google Scholar 

  19. C Lerman B Trock BK Rimer et al. (1991) ArticleTitlePsychological and behavioural implications of abnormal mammograms Ann Intern Med 114 657–61 Occurrence Handle1:STN:280:By6C28nhs1M%3D Occurrence Handle2003712

    CAS  PubMed  Google Scholar 

  20. K Brain P Norman J Gray R. Mansel (1999) ArticleTitleAnxiety and adherence to breast self-examination in women with a family history of breast cancer Psychosom Med 61 181–7 Occurrence Handle1:STN:280:DyaK1M3hvFOjtA%3D%3D Occurrence Handle10204971

    CAS  PubMed  Google Scholar 

  21. P Hopwood A Shenton F Lalloo et al. (2001) ArticleTitleRisk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer J Med Genet 38 139–42 Occurrence Handle10.1136/jmg.38.2.139 Occurrence Handle1:STN:280:DC%2BD3M7psFKmtA%3D%3D Occurrence Handle11288719

    Article  CAS  PubMed  Google Scholar 

  22. MH Wolf SM Putnam SA James WB. Stiles (1978) ArticleTitleThe medical interview satisfaction scale: development of a scale to measure patient perceptions of physician behaviour J Behav Med 1 391–401 Occurrence Handle1:STN:280:Bi%2BD38bmvV0%3D Occurrence Handle755868

    CAS  PubMed  Google Scholar 

  23. E Wallace A Hirds H Campbell et al. (2004) ArticleTitleA cross-sectional survey to estimate the prevalence of family history of colorectal, breast and ovarian cancer in a Scottish general practice population Br J Cancer 91 1575–9 Occurrence Handle1:STN:280:DC%2BD2crgvFOqsQ%3D%3D Occurrence Handle15381929

    CAS  PubMed  Google Scholar 

  24. RJ Mitchell D Brewster H Campbell et al. (2004) ArticleTitleAccuracy of reporting of family history of colorectal cancer Gut 53 291–5 Occurrence Handle1:STN:280:DC%2BD2c%2FlsVyiuw%3D%3D Occurrence Handle14724166

    CAS  PubMed  Google Scholar 

  25. A Bish S Sutton C Jacobs et al. (2002) ArticleTitleChanges in psychological distress after cancer genetic counselling: a comparison of affected and unaffected women Br J Cancer 86 43–50 Occurrence Handle10.1038/sj.bjc.6600030 Occurrence Handle1:STN:280:DC%2BD387itFWmug%3D%3D Occurrence Handle11857010

    Article  CAS  PubMed  Google Scholar 

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Authors and Affiliations

  1. Department of Clinical Genetics, Molecular Medicine Centre, Western General Hospital, Edinburgh, UK

    Susan Holloway, Mary Porteous & Roseanne Cetnarskyj

  2. Department of Public Health Sciences, University of Edinburgh Medical School, Teviot Place, Edinburgh, EH8 9AG, UK

    Roseanne Cetnarskyj & Harry Campbell

  3. Cancer Research UK, Edinburgh Oncology Unit, Western General Hospital, Edinburgh, UK

    Robert Rush

  4. General Practice Section, Division of Community Health Sciences, University of Edinburgh, Edinburgh, UK

    Sally Appleton

  5. Lothian NHS Board, Edinburgh, UK

    Dermot Gorman

Authors
  1. Susan Holloway
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  2. Mary Porteous
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  3. Roseanne Cetnarskyj
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  4. Robert Rush
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  5. Sally Appleton
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  6. Dermot Gorman
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  7. Harry Campbell
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Corresponding author

Correspondence to Harry Campbell.

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Holloway, S., Porteous, M., Cetnarskyj, R. et al. Referrals of patients to colorectal cancer genetics services in south-east Scotland. Familial Cancer 4, 151–161 (2005). https://doi.org/10.1007/s10689-004-4488-y

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  • DOI: https://doi.org/10.1007/s10689-004-4488-y

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