Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

Journal of Community Genetics

Volumn 3, Issue 4, 2012, Pages 265-274

  Van Riel, E ^a   Van Dulmen, S ^b   Ausems, M G E M ^a  

^a UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

^b NETHERLANDS INSTITUTE FOR HEALTH SERVICES RESEARCH   (Netherlands)

Author keywords

Accessibility; Cancer genetic counseling; Education; Initiative; Referral process

Indexed keywords

DNA;

ARTICLE; CANCER GENETICS; COMMUNITY HOSPITAL; CONTROLLED STUDY; DEMOGRAPHY; DOCTOR PATIENT RELATION; EDUCATIONAL STATUS; ETHNIC DIFFERENCE; FAMILY HISTORY; FEMALE; GENETIC ANALYSIS; GENETIC COUNSELING; HUMAN; IMMIGRANT; MAJOR CLINICAL STUDY; MALE; NETHERLANDS; PATIENT REFERRAL; PRIORITY JOURNAL; UNIVERSITY HOSPITAL;

EID: 84869115835     PISSN: 1868310X     EISSN: 18686001     Source Type: Journal    
DOI: 10.1007/s12687-012-0090-4     Document Type: Article

References (49)

1. Aalfs CM, Oort FJ, De Haes JC, Leschot NJ, Smets EM (2007) A comparison of counselee and counselor satisfaction in reproductive genetic counseling. Clin Genet 72(2):74-82. doi:10.1111/j.1399-0004.2007.00834.x
2. Albada A, Van Dulmen S, Lindhout D, Bensing JM, Ausems MG (2011a) A pre-visit tailored website enhances counselees' realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling. Fam Cancer. doi:10.1007/s10689-011-9479-1
3. Albada A, Werrett J, Van Dulmen S, Bensing JM, Chapman C, Ausems MG, Metcalfe A (2011b) Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands? J Commun Genet 2(4):233-247. doi:10.1007/s12687-011-0061-1
4. 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(10):751-757. doi:10.1097/GIM.0b013e318185212a
5. Allain DC (2008) Genetic counseling and testing for common hereditary breast cancer syndromes: a paper from the 2007 William Beaumont hospital symposium on molecular pathology. J Mol Diagn 10(5):383-395. doi:10.2353/jmoldx.2008.070161
6. Appleby-Tagoe JH, Foulkes WD, Palma L (2011) Reading between the lines: a comparison of responders and non-responders to a family history questionnaire and implications for cancer genetic counselling. J Genet Couns. doi:10.1007/s10897-011-9399-0
7. Ardern-Jones A, Kenen R, Eeles R (2005) Too much, too soon? Patients and health professionals' views concerning the impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. Eur J Cancer Care (Engl) 14(3):272-281. doi:10.1111/j.1365-2354.2005.00574.x
8. Armstrong K, Stopfer J, Calzone K, Fitzgerald G, Coyne J, Weber B (2002) What does my doctor think? Preferences for knowing the doctor's opinion among women considering clinical testing for BRCA1/2 mutations. Genet Test 6(2):115-118
9. Armstrong K, Weber B, Stopfer J, Calzone K, Putt M, Coyne J, Schwartz JS (2003) Early use of clinical BRCA1/2 testing: associations with race and breast cancer risk. Am J Med Genet A 117 A (2): 154-160
10. Armstrong K, Micco E, Carney A, Stopfer J, Putt M (2005) Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. JAMA 293(14):1729-1736
11. Arnold M, Aarts MJ, Siesling S, Van Der Aa M, Visser O, Coebergh JW (2011) Breast and stomach cancer incidence and survival in migrants in the Netherlands, 1996-2006. Eur J Cancer Prev 20(3):150-156. doi:10.1097/CEJ. 0b013e3283431c40
12. Baer HJ, Brawarsky P, Murray MF, Haas JS (2010) Familial risk of cancer and knowledge and use of genetic testing. J Gen Intern Med 25(7):717-724. doi:10.1007/s11606-010-1334-9
13. Barlow-Stewart K, Yeo SS, Meiser B, Goldstein D, Tucker K, Eisenbruch M (2006) Toward cultural competence in cancer genetic counseling and genetics education: lessons learned from Chinese-Australians. Genet Med 8(1):24-32. doi:10.1097/01.gim.0000195884.86201.a0
14. Batty GD, der G, Macintyre S, Deary IJ (2006) Does IQ explain socioeconomic inequalities in health? Evidence from a population based cohort study in the west of Scotland. BMJ 332(7541):580-584. doi:10.1136/bmj.38723. 660637. AE
15. Bluman LG, Rimer BK, Berry DA, Borstelmann N, Iglehart JD, Regan K, Schildkraut J, Winer EP (1999) Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2. J Clin Oncol 17(3):1040-1046
16. Brain K, Gray J, Norman P, Parsons E, Clarke A, Rogers C, Mansel R, Harper P (2000) Why do women attend familial breast cancer clinics? J Med Genet 37(3):197-202
17. Brown KL, Hutchison R, Zinberg RE, McGovern MM (2005) Referral and experience with genetic testing among women with early onset breast cancer. Genet Test 9(4):301-305
18. Butow P, Devine R, Boyer M, Pendlebury S, Jackson M, Tattersall MH (2004) Cancer consultation preparation package: changing patients but not physicians is not enough. J Clin Oncol 22(21):4401-4409. doi:10.1200/JCO.2004.66.155
19. Chin TM, Tan SH, Lim SE, Iau P, Yong WP, Wong SW, Lee SC (2005) Acceptance, motivators, and barriers in attending breast cancer genetic counseling in Asians. Cancer Detect Prev 29(5):412-418. doi:10.1016/j.cdp. 2005.06.009
20. 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(3):215-231
21. Etchegary H, Cappelli M, Potter B, Vloet M, Graham I, Walker M, Wilson B (2010) Attitude and knowledge about genetics and genetic testing. Publ Health Genom 13(2):80-88. doi:10.1159/000220034
22. Forman AD, Hall MJ (2009) Influence of race/ethnicity on genetic counseling and testing for hereditary breast and ovarian cancer. Breast J 15(Suppl 1):S56-62. doi:10.1111/j.1524-4741.2009.00798.x
23. Geer KP, Ropka ME, Cohn WF, Jones SM, Miesfeldt S (2001) Factors influencing patients' decisions to decline cancer genetic counseling services. J Genet Couns 10(1):25-40
24. Heck JE, Franco R, Jurkowski JM, Sheinfeld Gorin S (2008) Awareness of genetic testing for cancer among United States Hispanics: the role of acculturation. Commun Genet 11(1):36-42. doi:10.1159/000111638
25. Holloway SM, Bernhard B, Campbell H, Cetnarskyj R, Lam WW (2008) Inequality of use of cancer genetics services by members of breast, ovarian and colorectal cancer families in South East Scotland. Fam Cancer 7(3):259-264. doi:10.1007/s10689-008-9184-x
26. Levy DE, Garber JE, Shields AE (2009) Guidelines for genetic risk assessment of hereditary breast and ovarian cancer: early disagreements and low utilization. J Gen Intern Med 24(7):822-828. doi:10.1007/s11606-009-1009-6
27. Lewis N, Gray SW, Freres DR, Hornik RC (2009) Examining crosssource engagement with cancer-related information and its impact on doctor-patient relations. Health Commun 24(8):723-734. doi:10.1080/10410230903264030
28. McCann S, MacAuley D, Barnett Y (2005) Genetic consultations in primary care: GPs' responses to three scenarios. Scand J Prim Health Care 23(2):109-114. doi:10.1080/02813430510015259
29. Meyer LA, Anderson ME, Lacour RA, Suri A, Daniels MS, Urbauer DL, Nogueras-Gonzalez GM, Schmeler KM, Gershenson DM, Lu KH (2010) Evaluating women with ovarian cancer for BRCA1 and BRCA2 mutations: missed opportunities. Obstet Gynecol 115(5):945-952. doi:10.1097/AOG.0b013e3181da08d7
30. Morgan D, Sylvester H, Lucas FL, Miesfeldt S (2010) Hereditary breast and ovarian cancer: referral source for genetic assessment and communication regarding assessment with nongenetic clinicians in the community setting. Genet Med 12(1):25-31. doi:10.1097/GIM.0b013e3181c60955
31. Nathanson JW, Zisman TL, Julian C, McCaffrey S, Rubin DT (2008) Identification of patients at increased risk for colorectal cancer in an open access endoscopy center. J Clin Gastroenterol 42(9):1025-1031. doi:10.1097/MCG.0b013e3181468613
32. Nippert I, Harris HJ, Julian-Reynier C, Kristoffersson U, Ten Kate LP, Anionwu E, Benjamin C, Challen K, Schmidtke J, Nippert RP, Harris R (2011) Confidence of primary care physicians in their ability to carry out basic medical genetic tasks-a European survey in five countries-part 1. J Commun Genet 2:1-11. doi:10.1007/s12687-010-0030-0
33. Overbeek LI, Hoogerbrugge N, Van Krieken JH, Nagengast FM, Ruers TJ, Ligtenberg MJ, Hermens RP (2008) Most patients with colorectal tumors at young age do not visit a cancer genetics clinic. Dis Colon Rectum 51(8):1249-1254
34. Pieterse AH, Van Dulmen AM, Beemer FA, Ausems MG, Bensing JM (2006) Tailoring communication in cancer genetic counseling through individual video-supported feedback: a controlled pretest-posttest design. Patient Educ Couns 60(3):326-335. doi:10.1016/j.pec.2005.06.009
35. Pieterse AH, Van Dulmen AM, Beemer FA, Bensing JM, Ausems MG (2007) Cancer genetic counseling: communication and counselees' post-visit satisfaction, cognitions, anxiety, and needs fulfillment. J Genet Couns 16(1):85-96. doi:10.1007/s10897-006-9048-1
36. Spruill IJ (2010) Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar. J Commun Genet 1:125-132. doi:10.1007/s12687-010-0017-x
37. Statistics Netherlands (2003) Utrecht has the most highly educated population. http://www.cbs.nl/en-GB/menu/themas/onderwijs/publicaties/artikelen/ archief/2003/2003-1222-wm.htm? Languageswitch0on. Accessed April 2011
38. Statistics Netherlands (2006) Dutch Standard Classification of Education (SOI). http://www.cbs.nl/nl-NL/menu/methoden/classificaties/overzicht/soi/2006/ default.htm. Accessed April 2011
39. Statistics Netherlands (2008) Population; sex, age, nationality. http://statline.cbs.nl/StatWeb/publication/?DM0SLNL&PA037325&D10a& D200&D300&D400&D500-4,137,152,215,232&D600,4,9,(l-1) -l&HDR0G2,G1,G3,T&STB0G4,G5&VW0T. Accessed April 2011
40. Statistics Netherlands (2009) Population; education, sex, age. http://statline.cbs.nl/StatWeb/publication/?DM0SLNL&PA071822NED& D100&D200&D300&D400-2&D50a&D600&D70a&VW0T. Accessed April 2011
41. Stirbu I, Kunst AE, Vlems FA, Visser O, Bos V, Deville W, Nijhuis HG, Coebergh JW (2006) Cancer mortality rates among first and second generation migrants in the Netherlands: convergence toward the rates of the native Dutch population. Int J Cancer 119(11):2665-2672. doi:10.1002/ijc.22200
42. Tops CM, Wijnen JT, Hes FJ (2009) Introduction to molecular and clinical genetics of colorectal cancer syndromes. Best Pract Res Clin Gastroenterol 23(2):127-146. doi:10.1016/j.bpg.2009.02.002
43. UNESCO (2006) International Standard Classification of Education 1997. http://www.unesco.org/education/information/nfsunesco/doc/isced-1997.htm. Accessed April 2011
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(6):410-414
45. Van Riel E, Wárlám-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 (Engl) 19(3):369-376
46. Vasen HF, Moslein G, Alonso A, Aretz S, Bernstein I, Bertario L, Blanco I, Bulow S, Burn J, Capella G, Colas C, Engel C, Frayling I, Rahner N, Hes FJ, Hodgson S, Mecklin JP, Moller P, Myrhoj T, Nagengast FM, Parc Y, Ponz De Leon M, Renkonen-Sinisalo L, Sampson JR, Stormorken A, Tejpar S, Thomas HJ, Wijnen J, Lubinski J, Jarvinen H, Claes E, Heinimann K, Karagiannis JA, Lindblom A, Dove-Edwin I, Muller H (2010) Recommendations to improve identification of hereditary and familial colorectal cancer in Europe. Fam Cancer 9(2):109-115. doi:10.1007/s10689-009-9291-3
47. Visser O, Van Der Kooy K, Van Peppen AM, Ory FG, Van Leeuwen FE (2004) Breast cancer risk among first-generation migrants in the Netherlands. Br J Cancer 90(11):2135-2137. doi:10.1038/sj.bjc.6601821
48. 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(2):166-170. doi:10.1054/bjoc.2001. 1893
49. Wong C, Gibbs P, Johns J, Jones I, Faragher I, Lynch E, Macrae F, Lipton L (2008) Value of database linkage: are patients at risk of familial colorectal cancer being referred for genetic counselling and testing? Intern Med J 38(5):328-333. doi:10.1111/j.1445-5994.2007.01470.x