Journal of Community Genetics

, Volume 2, Issue 4, pp 233–247 | Cite as

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

  • Akke Albada
  • Julie Werrett
  • Sandra Van Dulmen
  • Jozien M. Bensing
  • Cyril Chapman
  • Margreet G. E. M. Ausems
  • Alison Metcalfe
Original Article

Abstract

Counselees from different countries may differ in demographic and medical characteristics and this could affect their pre-counselling cognitions and psychosocial variables. Research outcomes may therefore not be easily transferable between countries. To examine this, a cross-national comparison of UK (West Midlands: WM) and Dutch (Middle Netherlands: MN) counselees in breast cancer genetic counselling was conducted. Two hundred thirty-eight WM and 156 MN proband counselees were compared on demographics, breast cancer history and referral pathways. Multivariate logistic regression analyses were performed to check whether national differences in knowledge of breast cancer and heredity, risk perception, worry and information needs persisted when corrected for the background characteristics. About half of the Dutch compared to 8% of UK counselees were affected by breast cancer. More UK than Dutch counselees were at high risk from hereditary breast cancer. UK counselees had higher risk perceptions and more knowledge about breast cancer prevalence, but these differences lost significance when corrected for counselees' risk levels and other background characteristics. Counselees from the UK might report higher levels of worry than Dutch counselees and this could not be explained by their background characteristics. Comparisons of findings between the UK and the Netherlands show that the UK seems to have a higher percentage of high-risk referrals and these counselees seem to have higher risk perceptions. Irrespective of their actual risk level, UK counselees might be more worried. Comparing findings between the different countries raises questions about how transferable research findings are from one culture to another.

Keywords

Breast cancer Genetic counselling Brca1/2 Referrals GP International comparison 

Supplementary material

12687_2011_61_MOESM1_ESM.doc (24 kb)
Table IBreast cancer risk, breast cancer status and age of participants versus decliners (DOC 23.5 kb)

References

  1. Al Habsi H, Lim JN, Chu CE, Hewison J (2008) Factors influencing the referrals in primary care of asymptomatic patients with a family history of cancer. Genet Med 10:751–757PubMedCrossRefGoogle Scholar
  2. Albada A (2011) Preparing for breast cancer genetic counselling: web-based education for counselees. PhD thesis Utrecht UniversityGoogle Scholar
  3. Bernhardt BA, Biesecker BB, Mastromarino CL (2000) Goals, benefits, and outcomes of genetic counseling: client and genetic counselor assessment. Am J Med Genet 94:189–197PubMedCrossRefGoogle Scholar
  4. Bethea J, Qureshi N, Drury N, Guilbert P (2008) The impact of genetic outreach education and support to primary care on practitioner's confidence and competence in dealing with familial cancers. Community Genet 11:289–294PubMedCrossRefGoogle Scholar
  5. Biesecker BB (2001) Goals of genetic counseling. Clin Genet 60:323–330PubMedCrossRefGoogle Scholar
  6. Biesecker BB, Boehnke M, Calzone K, Markel DS, Garber JE, Collins FS, Weber BL (1993) Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. JAMA 269:1970–1974PubMedCrossRefGoogle Scholar
  7. Calsbeek H, Morren M, Bensing J, Rijken M (2007) Knowledge and attitudes towards genetic testing: a two year follow-up study in patients with asthma, diabetes mellitus and cardiovascular disease. J Genet Couns 16:493–504PubMedCrossRefGoogle Scholar
  8. CBO Dutch Institute for Healthcare Improvement (2005a) Guideline hereditary tumours: Familial mamma/ovarian carcinoma. (Richtlijn erfelijke tumoren: Familiair Mamma/Ovarium carcinoom). www.oncoline.nl
  9. CBO Dutch Institute for Healthcare Improvement (2005b) Guideline hereditary tumours: Hereditary mamma/ovarian carcinoma. (Richtlijn erfelijke tumoren: Hereditair Mamma/Ovarium carcinoom). www.oncoline.nl
  10. Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E (2003) Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet 116A:11–19PubMedCrossRefGoogle Scholar
  11. Claus EB, Risch N, Thompson WD (1994) Autosomal dominant inheritance of early onset breast cancer. Implications for risk prediction. Cancer 73:643–651PubMedCrossRefGoogle Scholar
  12. Culver J, Burke W, Yasui Y, Durfy S, Press N (2001) Participation in breast cancer genetic counseling: the influence of educational level, ethnic background and risk perception. J Genet Couns 10:215–231CrossRefGoogle Scholar
  13. Ellington L, Roter D, Dudley WN, Baty BJ, Upchurch R, Larson S, Wylie JE, Smith KR, Botkin JR (2005) Communication analysis of BRCA1 genetic counseling. J Genet Couns 14:377–386PubMedCrossRefGoogle Scholar
  14. Elwyn G, Iredale R, Gray J (2002) Reactions of GPs to a triage-controlled referral system for cancer genetics. Fam Pract 19:65–71PubMedCrossRefGoogle Scholar
  15. Glanz K, Grove J, Lerman C, Gotay C, Le Marchand L (1999) Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiol Biomarkers Prev 8:329–336PubMedGoogle Scholar
  16. Godard B, Kääriänen H, Kristoffersson U, Tranebjaerg L, Coviello D, Aymé S (2003) Provision of genetic services in Europe: current practices and issues. Eur J Hum Genet 11:S13–S48PubMedCrossRefGoogle Scholar
  17. Hallowell N, Murton F, Statham H, Green JM, Richards MPM (1997) Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study. Br Med J 314:281–283CrossRefGoogle Scholar
  18. Henneman L, Timmermans DR, Van der Wal G (2004) Public experiences, knowledge and expectations about medical genetics and the use of genetic information. Community Genet 7:33–43PubMedCrossRefGoogle Scholar
  19. Holloway S, Porteous M, Cetnarskyj R, Anderson E, Rush R, Fry A, Gorman D, Steel M, Campbell H (2004) Patient satisfaction with two different models of cancer genetic services in south-east Scotland. Br J Cancer 90:582–589PubMedCrossRefGoogle Scholar
  20. Hopwood P, Van Asperen CJ, Borreani G, Bourret P, Decruyenaere M, Dishon S, Eisinger F, Evans DG, Evers-Kiebooms G, Gangeri L, Hagoel L, Legius E, Nippert I, Rennert G, Schlegelberger B, Sevilla C, Sobol H, Tibben A, Welkenhuysen M, Julian-Reynier C (2003) Cancer genetics service provision: a comparison of seven European centres. Community Genet 6:192–205PubMedCrossRefGoogle Scholar
  21. Hopwood P, Wonderling D, Watson M, Cull A, Douglas F, Cole T, Eccles D, Gray J, Murday V, Steel M, Burn J, McPherson K (2004) A randomised comparison of UK genetic risk counselling services for familial cancer: psychosocial outcomes. Br J Cancer 91:884–892PubMedGoogle Scholar
  22. Lucassen A, Watson E, Harcourt J, Rose P, O'Grady J (2001) Guidelines for referral to a regional genetics service: GPs respond by referring more appropriate cases. Fam Pract 18:135–140PubMedCrossRefGoogle Scholar
  23. Meiser B, Butow P, Baratt A, Gattas M, Gaff C, Haan E, Gleeson M, Dudding T, Tucker K, The Psychological Impact Collaborative Group (2001) Risk perceptions and knowledge of breast cancer genetics in women at increased risk of developing hereditary breast cancer. Psychol Health 16:297–311CrossRefGoogle Scholar
  24. Meiser B, Gaff C, Julian-Reynier C, Biesecker BB, Esplen MJ, Vodermaier A, Tibben A (2006) International perspectives on genetic counseling and testing for breast cancer risk. Breast Dis 27:109–125PubMedGoogle Scholar
  25. Mesters I, Ausems A, De Vries H (2005) General public's knowledge, interest and information needs related to genetic cancer: an exploratory study. Eur J Cancer Prev 14:69–75PubMedCrossRefGoogle Scholar
  26. Metcalfe A, Werrett J, Burgess L, Clifford C (2007) Psychosocial impact of the lack of information given at referral about familial risk for cancer. Psychooncology 16:458–465PubMedCrossRefGoogle Scholar
  27. Metcalfe A, Werrett J, Burgess L, Chapman C, Clifford C (2009) Cancer genetic predisposition: information needs of patients irrespective of risk level. Fam Cancer 8:403–412PubMedCrossRefGoogle Scholar
  28. Morren M, Rijken M, Baanders AN, Bensing J (2007) Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease. Patient Educ Couns 65:197–204PubMedCrossRefGoogle Scholar
  29. National Statistics (2004a) People & migration, Ethnicity. http://www.statistics.gov.uk/CCI/nugget.asp?ID=764&Pos=4&ColRank=1&Rank=176
  30. National Statistics (2004b) People & migration, Ethnicity: regional distribution. http://www.statistics.gov.uk/cci/nugget.asp
  31. National Statistics (2009) Regional trends in education. http://www.statistics.gov.uk/articles/RegionalTrends/RT41-Article5.pdf
  32. NICE (2006) Clinical guideline 14. Familial breast cancer. The classification and care of women at risk of familial breast cancer in primary, secondary and tertiary care. http://guidance.nice.org.uk/CG41/Guidance/pdf/English
  33. Phelps C, Platt K, France L, Gray J, Iredale R (2004) Delivering information about cancer genetics via letter to patients at low and moderate risk of familial cancer: a pilot study in Wales. Fam Cancer 3:55–59PubMedCrossRefGoogle Scholar
  34. Pieterse A, Van Dulmen S, Ausems M, Schoemaker A, Beemer F, Bensing J (2005a) QUOTE-geneca: development of a counselee-centered instrument to measure needs and preferences in genetic counseling for hereditary cancer. Psychooncology 14:361–375PubMedCrossRefGoogle Scholar
  35. Pieterse AH, Ausems MGEM, Van Dulmen AM, Beemer FA, Bensing JM (2005b) Initial cancer genetic counseling consultation: change in counselees' cognitions and anxiety, and association with addressing their needs and preferences. Am J Med Genet A 137:27–35PubMedGoogle Scholar
  36. Pieterse AH, Van Dulmen AM, Ausems MGEM, Beemer FA, Bensing JM (2005c) Communication in cancer genetic counselling: does it reflect counselees' pre-visit needs and preferences? Br J Cancer 92:1671–1678PubMedCrossRefGoogle Scholar
  37. Pieterse A, Ausems M, Spreeuwenberg P, Van Dulmen S (2011) Affected versus unaffected women seeking breast cancer genetic counselling: long-term influence on cognitions and distress. Patient Educ Couns (in press)Google Scholar
  38. Shields AE, Burke W, Levy DE (2008) Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Genet Med 10:404–414PubMedCrossRefGoogle Scholar
  39. Statistics Netherlands (2003) Utrecht has the most highly educated population. http://www.cbs.nl/en-GB/menu/themas/onderwijs/publicaties/artikelen/archief/2008/2008-2436-wm
  40. Statistics Netherlands (2009a) Almost as many higher as lower educated Dutch. http://www.cbs.nl/en-GB/menu/themas/onderwijs/publicaties/artikelen/archief/2008/2008-2436-wm
  41. Statistics Netherlands (2009b) People with a foreign background. http://www.cbs.nl/en-GB/menu/themas/dossiers/allochtonen/methoden/begrippen
  42. STOET, Vereniging Klinische Genetica Nederland, Werkgroep Klinische Oncogenetica (2005) Erfelijke tumoren: Richtlijnen voor diagnostiek en preventie. www.stoet.nl
  43. Unesco (1997) International Standard Classification of Education ISCED 1997 http://www.unesco.org/education/information/nfsunesco/doc/isced_1997.htm
  44. Van Asperen CJ, Van Dijk S, Zoeteweij MW, Timmermans DR, De Bock GH, Meijers-Heijboer EJ, Niermeijer MF, Breuning MH, Kievit J, Otten W (2002) What do women really want to know? Motives for attending familial breast cancer clinics. J Med Genet 39:410–414PubMedCrossRefGoogle Scholar
  45. Van Asperen CJ, Jonker MA, Jacobi CE, Van Diemen-Homan JE, Bakker E, Breuning MH, Van Houwelingen JC, de Bock GH (2004) Risk estimation for healthy women from breast cancer families: new insights and new strategies. Cancer Epidemiol Biomarkers Prev 13:87–93PubMedCrossRefGoogle Scholar
  46. Van der Zee J, Kroneman MW (2007) Bismarck or Beveridge: a beauty contest between dinosaurs. BMC Health Services Research 7Google Scholar
  47. Van Dijk S, Otten W, Van Asperen CJ, Timmermans DR, Tibben A, Zoeteweij MW, Silberg S, Breuning MH, Kievit J (2004) Feeling at risk: how women interpret their familial breast cancer risk. Am J Med Genet 131A:42–49CrossRefGoogle Scholar
  48. Van Dijk S, Timmermans DRM, Meijers-Heijboer EJ, Tibben A, Van Asperen CJ, Otten W (2006) Clinical characteristics affect the impact of an uninformative DNA-test result: the course of worry and distress experienced by women who apply for genetic testing for breast cancer. J Clin Oncol 24:3672–3677PubMedCrossRefGoogle Scholar
  49. Van Oostrom I, Meijers-Heijboer H, Lodder LN, Duivenvoorden HJ, Van Gool AR, Seynaeve C, Van der Meer CA, Klijn JG, Van Geel BN, Burger CW, Wladimiroff JW, Tibben A (2003) Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol 21:3867–3874PubMedCrossRefGoogle Scholar
  50. Van Riel E, Warlam-Rodenhuis CC, Verhoef S, Rutgers EJ, Ausems MG (2010) BRCA testing of breast cancer patients: medical specialists' referral patterns, knowledge and attitudes to genetic testing. Eur J Cancer Care 19:369–376CrossRefGoogle Scholar
  51. Van Riel E, Van Dulmen S, Ausems MGEM (2011) Access to cancer genetic counselling: who is being referred and why? Characteristics of counselees and their referral. SubmittedGoogle Scholar
  52. Walter FM, Emery J, Braithwaite D, Marteau TM (2004) Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research. Ann Fam Med 2:583–594PubMedCrossRefGoogle Scholar
  53. Watson E, Austoker J, Lucassen A (2001) A study of GP referrals to a family cancer clinic for breast/ovarian cancer. Fam Pract 18:131–134PubMedCrossRefGoogle Scholar
  54. Watson E, Clements A, Lucassen A, Yudkin P, Mackay J, Austoker J (2002) Education improves general practitioner (GP) management of familial breast/ovarian cancer: findings from a cluster randomised controlled trial. J Med Genet 39:779–781PubMedCrossRefGoogle Scholar
  55. White DB, Bonham VL, Jenkins J, Stevens N, McBride CM (2008) Too many referrals of low-risk women for BRCA1/2 genetic services by family physicians. Cancer Epidemiol Biomarkers Prev 17:2980–2986PubMedCrossRefGoogle Scholar
  56. Williams S, Botterill A (2006) Profiling Areas using the Output Area Classification, Regional Trends. National StatisticsGoogle Scholar
  57. Wilson BJ, Torrance N, Mollison J, Wordsworth S, Gray JR, Haites NE, Grant A, Campbell MK, Miedyzbrodzka Z, Clarke A, Watson MS, Douglas A (2005) Improving the referral process for familial breast cancer genetic counselling: findings of three randomised controlled trials of two interventions. Health Technol Assess 9:1–126PubMedGoogle Scholar
  58. WMRGU (2004) Referral guidelines West Midlands Regional Genetics Unit (WMRGU). http://www.bwhct.nhs.uk/genetics-index/genetics-wmfacs-service/genetics-wmfacs-service-guidelines.htm
  59. Wonderling D, Hopwood P, Cull A, Douglas F, Watson M, Burn J, McPherson K (2001) A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics. Br J Cancer 85:166–170PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Akke Albada
    • 1
  • Julie Werrett
    • 2
  • Sandra Van Dulmen
    • 1
  • Jozien M. Bensing
    • 1
    • 3
  • Cyril Chapman
    • 4
  • Margreet G. E. M. Ausems
    • 5
  • Alison Metcalfe
    • 2
  1. 1.NIVEL (Netherlands Institute for Health Services Research)Utrechtthe Netherlands
  2. 2.School of Health & Population Science, College of Medicine & DentistryUniversity of BirminghamBirminghamUK
  3. 3.Department of Health PsychologyUtrecht UniversityUtrechtThe Netherlands
  4. 4.West Midlands Regional Genetics UnitBirmingham Women Hospital NHS TrustBirminghamUK
  5. 5.Department of Medical GeneticsUniversity Medical Center UtrechtUtrechtThe Netherlands

Personalised recommendations