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

Journal of Community Genetics

Volumn 2, Issue 4, 2011, Pages 233-247

  Albada, Akke ^a   Werrett, Julie ^b   Van Dulmen, Sandra ^a   Bensing, Jozien M ^a,c   Chapman, Cyril ^d   Ausems, Margreet G E M ^e   Metcalfe, Alison ^b  

^a NETHERLANDS INSTITUTE FOR HEALTH SERVICES RESEARCH   (Netherlands)

^b UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^c UTRECHT UNIVERSITY   (Netherlands)

^d BIRMINGHAM WOMEN S HOSPITAL   (United Kingdom)

^e UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

Author keywords

Brca1 2; Breast cancer; Genetic counselling; GP; International comparison; Referrals

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; AUTOSOMAL INHERITANCE; AWARENESS; BREAST CANCER; CANCER PREVENTION; CANCER RISK; CANCER THERAPY; COMPARATIVE STUDY; CONTROLLED STUDY; FEMALE; GENETIC COUNSELING; GENETIC RISK; GENETIC SCREENING; HUMAN; MEDICAL INFORMATION; NETHERLANDS; PATIENT REFERRAL; PREVALENCE; PRIORITY JOURNAL; RISK ASSESSMENT; RISK FACTOR; SCORING SYSTEM; UNITED KINGDOM; WOMEN'S HEALTH;

EID: 84856474353     PISSN: 1868310X     EISSN: 18686001     Source Type: Journal    
DOI: 10.1007/s12687-011-0061-1     Document Type: Article

References (60)

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 10:751-757
2. Albada A (2011) Preparing for breast cancer genetic counselling: webbased education for counselees. PhD thesis Utrecht University
3. Bernhardt BA, Biesecker BB, Mastromarino CL (2000) Goals, benefits, and outcomes of genetic counseling: client and genetic counselor assessment. Am J Med Genet 94:189-197
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 11:289-294 (Pubitemid 351725040)
5. Biesecker BB (2001) Goals of genetic counseling. Clin Genet 60:323-330 (Pubitemid 33094893)
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 269:1970-1974 (Pubitemid 23106869)
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 16:493-504 (Pubitemid 47305505)
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:11-19 (Pubitemid 36008062)
11. Claus EB, Risch N, Thompson WD (1994) Autosomal dominant inheritance of early onset breast cancer. Implications for risk prediction. Cancer 73:643-651
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 10:215-231 (Pubitemid 33818208)
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 14:377-386 (Pubitemid 41407044)
14. Elwyn G, Iredale R, Gray J (2002) Reactions of GPs to a triage-controlled referral system for cancer genetics. Fam Pract 19:65-71 (Pubitemid 34173277)
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 8:329-336 (Pubitemid 29193887)
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-S48 (Pubitemid 38263568)
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 314:281-283 (Pubitemid 27047385)
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 7:33-43 (Pubitemid 39370486)
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 90:582-589 (Pubitemid 38297194)
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 6:192-205 (Pubitemid 39179226)
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 91:884-892 (Pubitemid 39273780)
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 18:135-140 (Pubitemid 32273355)
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 16:297-311 (Pubitemid 33677931)
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 27:109-125
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 14:69-75 (Pubitemid 40396933)
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 16:458-465 (Pubitemid 46840057)
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 8:403-412
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 65:197-204 (Pubitemid 46073559)
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 3:55-59 (Pubitemid 40655355)
34. Pieterse A, Van Dulmen S, Ausems M, Schoemaker A, Beemer F, Bensing J (2005a) QUOTE-geneca: development of a counseleecentered instrument to measure needs and preferences in genetic counseling for hereditary cancer. Psychooncology 14:361-375 (Pubitemid 40674415)
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 137:27-35 (Pubitemid 41105531)
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 92:1671-1678 (Pubitemid 40756477)
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)
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 10:404-414
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 (2008) Annual report integration 2008. http://www.cbs.nl/nl-NL/menu/themas/dossiers/allochtonen/publicaties/ publicaties/archief/2008/2008-b61-pub.htm
41. 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
42. Statistics Netherlands (2009b) People with a foreign background. http://www.cbs.nl/en-GB/menu/themas/dossiers/allochtonen/methoden/begrippen
43. STOET, Vereniging Klinische Genetica Nederland,Werkgroep Klinische Oncogenetica (2005) Erfelijke tumoren: Richtlijnen voor diagnostiek en preventie. www.stoet.nl
44. Unesco (1997) International Standard Classification of Education ISCED 1997 http://www.unesco.org/education/information/nfsunesco/doc/isced-1997.htm
45. 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 39:410-414 (Pubitemid 34664975)
46. 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 13:87-93 (Pubitemid 38116625)
47. Van der Zee J, Kroneman MW (2007) Bismarck or Beveridge: a beauty contest between dinosaurs.BMC Health Services Research 7
48. 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:42-49 (Pubitemid 39434793)
49. 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 24:3672-3677 (Pubitemid 46630543)
50. 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 21:3867-3874 (Pubitemid 46606243)
51. 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 19:369-376
52. 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. Submitted
53. 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 2:583-594 (Pubitemid 39643434)
54. Watson E, Austoker J, Lucassen A (2001) A study of GP referrals to a family cancer clinic for breast/ovarian cancer. Fam Pract 18:131-134 (Pubitemid 32273354)
55. 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 39:779-781 (Pubitemid 35178733)
56. 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 17:2980-2986
57. Williams S, Botterill A (2006) Profiling Areas using the Output Area Classification, Regional Trends. National Statistics.
58. 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 9:1-126
59. 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
60. 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 85:166-170 (Pubitemid 32695734)