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.
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References
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
Albada A (2011) Preparing for breast cancer genetic counselling: web-based education for counselees. PhD thesis Utrecht University
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
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
Biesecker BB (2001) Goals of genetic counseling. Clin Genet 60:323–330
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
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
CBO Dutch Institute for Healthcare Improvement (2005a) Guideline hereditary tumours: Familial mamma/ovarian carcinoma. (Richtlijn erfelijke tumoren: Familiair Mamma/Ovarium carcinoom). www.oncoline.nl
CBO Dutch Institute for Healthcare Improvement (2005b) Guideline hereditary tumours: Hereditary mamma/ovarian carcinoma. (Richtlijn erfelijke tumoren: Hereditair Mamma/Ovarium carcinoom). www.oncoline.nl
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
Claus EB, Risch N, Thompson WD (1994) Autosomal dominant inheritance of early onset breast cancer. Implications for risk prediction. Cancer 73:643–651
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
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
Elwyn G, Iredale R, Gray J (2002) Reactions of GPs to a triage-controlled referral system for cancer genetics. Fam Pract 19:65–71
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
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
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
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
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
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
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
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
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
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
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
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
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
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
National Statistics (2004a) People & migration, Ethnicity. http://www.statistics.gov.uk/CCI/nugget.asp?ID=764&Pos=4&ColRank=1&Rank=176
National Statistics (2004b) People & migration, Ethnicity: regional distribution. http://www.statistics.gov.uk/cci/nugget.asp
National Statistics (2009) Regional trends in education. http://www.statistics.gov.uk/articles/RegionalTrends/RT41-Article5.pdf
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
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
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 14:361–375
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
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
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)
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
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
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
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
Statistics Netherlands (2009b) People with a foreign background. http://www.cbs.nl/en-GB/menu/themas/dossiers/allochtonen/methoden/begrippen
STOET, Vereniging Klinische Genetica Nederland, Werkgroep Klinische Oncogenetica (2005) Erfelijke tumoren: Richtlijnen voor diagnostiek en preventie. www.stoet.nl
Unesco (1997) International Standard Classification of Education ISCED 1997 http://www.unesco.org/education/information/nfsunesco/doc/isced_1997.htm
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
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
Van der Zee J, Kroneman MW (2007) Bismarck or Beveridge: a beauty contest between dinosaurs. BMC Health Services Research 7
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
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
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
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
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
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
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
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
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
Williams S, Botterill A (2006) Profiling Areas using the Output Area Classification, Regional Trends. National Statistics
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
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
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
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Table I
Breast cancer risk, breast cancer status and age of participants versus decliners (DOC 23.5 kb)
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Albada, A., Werrett, J., Van Dulmen, S. et al. Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?. J Community Genet 2, 233–247 (2011). https://doi.org/10.1007/s12687-011-0061-1
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DOI: https://doi.org/10.1007/s12687-011-0061-1