Advertisement

Familial Cancer

, Volume 6, Issue 2, pp 231–239 | Cite as

Patient perspectives on the Poole PCT cancer genetics service

  • Helen Allen
  • Lynn Maxwell
  • Nikki Dibley
  • Angela Bradley
  • Roger Baker
  • Peter Thomas
  • Donna McBride
Article

Abstract

Focussing on the primary care aspects of the Kenilworth model, the Poole Primary Care Trust (PCT) cancer genetics service has aimed to develop a high quality primary care-led service for the assessment and counselling of people concerned about their genetic risk of cancer. The service has been available through General Practitioner (GP) surgeries within the PCT since early 2006, and is delivered by Community Cancer Nurses as part of their role to provide proactive care and support to cancer patients, their families and the local population. Acting as a point of reference for cancer genetics at each practice, the nurses have supplied basic education to both health professionals and lay staff about the aims of the service and the genetic risk of cancer.

Feedback from service users is one of the key elements of the Poole evaluation. This article is based on the views of some of the first patients referred. The patients consulted one of the cancer nurses between June and December 2006, and were interviewed by a researcher about their experience. The interviews focussed on the psychosocial aspects of the patients’ experiences, which are less accessible through quantitative methods. The patients were encouraged to talk specifically and generally about their experiences, and described some of the feelings and emotions from the time of their referral onwards.

Keywords

Cancer genetics service Psychosocial aspects of users Qualitative evaluation 

Notes

Acknowledgements

We are grateful to Macmillan Cancer Support and the UK Department of Health for supporting and funding this project.

References

  1. 1.
    Brain K, Gray J, Norman P et al (2000) Randomized trial of a specialist genetic assessment service for familial breast cancer. J Natl Cancer Inst 92:1345–1351PubMedCrossRefGoogle Scholar
  2. 2.
    Wonderling D, Hopwood P, Cull A et al (2000) A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics. Br J Cancer 85:166–170CrossRefGoogle Scholar
  3. 3.
    Bleiker EM, Aaronson NK, Menko FH et al (1997) Genetic counseling for hereditary cancer: a pilot study on experiences of patients and family members. Patient Educ Couns 32:107–116PubMedCrossRefGoogle Scholar
  4. 4.
    Cull A, Anderson E, Campbell S et al (1999) The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress. Br J Cancer 79:501–508PubMedCrossRefGoogle Scholar
  5. 5.
    Gray J, Brain K, Norman P et al (2000) A model protocol evaluating the introduction of genetic assessment for women with a family history of breast cancer. J Med Genet 37:192–196PubMedCrossRefGoogle Scholar
  6. 6.
    Richards M, Hallowell N, Green J et al (1995) Counseling families with hereditary breast and ovarian cancer: a psychosocial perspective. J Genet Couns 4:219–233CrossRefGoogle Scholar
  7. 7.
    Hallowell N, Statham H, Murton F et al (1997) “Talking about chance”: the presentation of risk information during genetic counseling for breast and ovarian cancer. J Genet Couns 6:269–286CrossRefGoogle Scholar
  8. 8.
    Lloyd S, Watson M, Waites B et al (1996) Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetics counselling. Br J Cancer 74:482–487PubMedGoogle Scholar
  9. 9.
    Watson M, Lloyd S, Davidson J et al (1999) The impact of genetics counselling on risk perception and mental health in women with a family history of breast cancer. Br J Cancer 79:868–874PubMedCrossRefGoogle Scholar
  10. 10.
    Hallowell N, Statham H, Murton F (1998) Women’s understanding of their risk of developing breast/ovarian cancer before and after genetics counseling. J Genet Couns 7:345–364CrossRefGoogle Scholar
  11. 11.
    Hopwood P (1997) Psychological issues in cancer genetics: current research and future priorities. Patient Educ Couns 32:19–31PubMedCrossRefGoogle Scholar
  12. 12.
    Department of Health (2003) Our inheritance, our future: realising the potential of genetics in the NHS. Department of Health, LondonGoogle Scholar
  13. 13.
    Southampton University Hospitals NHS Trust (2006) Family history enquiry form. http://www.suht.nhs.uk/extranet/media/word/f/l/Genetics_Cancer_Referral_form_March_06.DOCGoogle Scholar
  14. 14.
    Robson R (2002) Real world research: a resource for social scientists and practitioner—researchers, 2nd edn. Blackwell, Oxford. pp 351–355Google Scholar
  15. 15.
    Clarke A, Parsons E, Williams A (1996) Outcomes and process in genetic counselling. Clin Gen 50:462–469CrossRefGoogle Scholar
  16. 16.
    McIntosh A, Shaw C, Evans G, Turnbull N, Bahar N, Barclay M, Easton D, Emery J, Gray J, Halpin J, Hopwood P, McKay J, Sheppard C, Sibbering M, Watson W, Wailoo A, Hutchinson A (2004; updated 2006) Clinical guidelines and evidence review for the classification and care of women at risk of familial breast cancer, London, National Collaborating Centre for Primary Care/University of Sheffield. NICE guideline CG014. www.nice.org.uk Google Scholar

Copyright information

© Springer Science + Business Media B.V. 2007

Authors and Affiliations

  • Helen Allen
    • 1
  • Lynn Maxwell
    • 2
  • Nikki Dibley
    • 2
  • Angela Bradley
    • 2
  • Roger Baker
    • 1
  • Peter Thomas
    • 1
  • Donna McBride
    • 3
  1. 1.Dorset RDSU, Cornelia HousePoole Hospital NHS TrustPooleUK
  2. 2.Community Cancer Nursing Service, Poole PCTCanford Health ClinicPooleUK
  3. 3.Wessex Clinical Genetics ServicePrincess Anne HospitalSouthamptonUK

Personalised recommendations