A systematic review of factors that act as barriers to patient referral to genetic services

European Journal of Human Genetics

Volumn 23, Issue 6, 2015, Pages 739-745

  Delikurt, Türem ^a,b   Williamson, Graham R ^a   Anastasiadou, Violetta ^b   Skirton, Heather ^a  

^a UNIVERSITY OF PLYMOUTH   (United Kingdom)

^b CYPRUS INSTITUTE OF NEUROLOGY AND GENETICS   (Cyprus)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; AWARENESS; BIBLIOGRAPHIC DATABASE; CANCER GENETICS; FAMILY HISTORY; FOLLOW UP; GENETIC COUNSELING; GENETIC RISK; GENETIC SCREENING; GENETIC SERVICE; HEALTH CARE PERSONNEL; HUMAN; MEDICAL HISTORY; MEDICAL RECORD; META ANALYSIS; PATIENT REFERRAL; PATIENT RISK; PRIORITY JOURNAL; QUALITY CONTROL; RISK ASSESSMENT; RISK FACTOR; SCREENING TEST; SYSTEMATIC REVIEW; HEALTH CARE DELIVERY; ORGANIZATION AND MANAGEMENT; UTILIZATION;

DELIVERY OF HEALTH CARE; GENETIC COUNSELING; GENETIC TESTING; REFERRAL AND CONSULTATION;

EID: 84929284692     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2014.180     Document Type: Article

References (58)

1. Nippert I, Harris HJ, Julian-Reynier C et al: Confidence of primary care physicians in their ability to carry out basic medical genetic tasks-a European survey in five countries-part 1. J Community Genet 2011; 2: 1-11.
2. Naidoo N, Pawitan Y, Soong R et al: Human genetics and genomics a decade after the release of the draft sequence of the human genome. Hum Genomics 2011; 5: 577-622.
3. Epstein CJ: Medical genetics in the genomic medicine of the 21st century. Am J Hum Genet 2006; 79: 434-438.
4. Skirton H, Patch C, Williams JK: Applied Genetics in Healthcare: A Handbook for Specialist Practitioners. Garland Science, Taylor & Francis Group: Abingdon, UK, 2005.
5. Institute of Medicine (US) Roundtable on Translating Genomic-Based Research for Health: Genetic service delivery: the current system and its strengths and challenges. Innovations in Service Delivery in the Age of Genomics: Workshop Summary. National Academies Press: Washington, DC, USA, 2009.
6. Centre for Reviews and Dissemination: Systematic Reviews: CRD's Guidance for Undertaking Reviews in Health Care. CRD, University of York: York, UK, 2009.
7. Kmet LRC, Cook LS: Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta Heritage Foundation for Medical Research (AHFMR): Edmonton, AB, Canada, 2004; Vol 22.
8. Dixon-Woods M, Agarwal S, Jones D et al: Synthesising qualitative and quantitative evidence: A review of possible methods. J Health Serv Res Policy 2005; 10: 45-53B.
9. Popay J, Roberts H, Sowden A et al: Guidance on the conduct of narrative synthesis in systematic reviews: A product from the ESRC methods programme. Version 1, April 2006.
10. Aalfs CM, Smets EMA, de Haes HCJM et al: Referral for genetic counselling during pregnancy: limited alertness and awareness about genetic risk factors among GPs. Fam Pract 2003; 20: 135-141.
11. Collins V, Halliday J, Williamson R: What predicts the use of genetic counseling services after the birth of a child with Down syndrome? J Genet Couns 2003; 12: 43-60.
12. Grover S, Stoffel EM, Bussone L et al: Physician assessment of family cancer history and referral for genetic evaluation in colorectal cancer patients. Clin Gastroenterol Hepatol 2004; 2: 813-819.
13. Koil CE, Everett JN, Hoechstetter L et al: Differences in physician referral practices and attitudes regarding hereditary breast cancer by clinical practice location. Genet Med 2003; 5: 364-369.
14. Lanceley A, Eagle Z, Ogden G et al: Family history and women with ovarian cancer: is it asked and does it matter: An observational study. Int J Gynecol Cancer 2012; 22: 254-259.
15. Sweet MK, Bradley LT, Westman AJ: Identification and referral of families at high risk for cancer susceptibility. J Clin Oncol 2002; 20: 528-537.
16. Beene-Harris RY, Wang C, Bach JV: Barriers to access: results from focus groups to identify genetic service needs in the community. Public Health Genomics 2007; 10: 10-18.
17. Collins V, Halliday J, Kahler S et al: Parents' experiences with genetic counseling after the birth of a baby with a genetic disorder: An exploratory study. J Genet Couns 2001; 10: 53-72.
18. Iredale R, Jones L, Gray J et al: 'The edge effect': An exploratory study of some factors affecting referrals to cancer genetic services in rural Wales. Health Place 2005; 11: 197-204.
19. MDCH: Genetics Through the Life Cycle: Improving Health and Preventing Disease. MDCH: Lansing, MI, USA, 2004.
20. McEwen AR, Young MA, Wake SA: Genetic counseling training and certification in Australasia. J Genet Couns 2013; 22: 875-884.
21. Horovitz DDG, de Mattos RA, Jo U et al: Medical genetic services in the state of Rio de Janeiro, Brazil. Public Health Genomics 2004; 7: 111-116.
22. Palmero EI, Ashton-Prolla P, da Rocha JCC et al: Clinical characterization and risk profile of individuals seeking genetic counseling for hereditary breast cancer in Brazil. J Genet Couns 2007; 16: 363-371.
23. McWalter K, Hasegawa L, Au S: Provision of genetics services on Guam. J Genet Couns 2013; 22: 885-889.
24. Padilla CD, de la Paz EMC: Genetic services and testing in the Philippines. J Community Genet 2012; 4: 399-411.
25. Wakefield CE, Ratnayake P, Meiser B et al: 'For all my family's sake, I should go and find out': An Australian report on genetic counseling and testing uptake in individuals at high risk of breast and/or ovarian cancer. Genet Test Mol Biomarkers 2011; 15: 379-385.
26. O'Neill SM, Peters JA, Vogel VG et al: Referral to cancer genetic counseling: Are there stages of readiness? Am J Med Genet C Semin Med Genet 2006; 142C: 221-231.
27. Van Riel E, Warlam-Rodenhuis CC, Verhoef S et al: BRCA testing of breast cancer patients: medical specialists' referral patterns, knowledge and attitudes to genetic testing. Eur J Cancer Care (Engl) 2010; 19: 369-376.
28. Vadaparampil S, McIntyre J, Quinn G: Awareness, perceptions, and provider recommendation related to genetic testing for hereditary breast cancer risk among at-risk hispanic women: similarities and variations by sub-ethnicity. Journal of Genetic Counseling 2010; 19: 618-629.
29. Quillin JM, Bodurtha JN, Siminoff LA et al: Exploring hereditary cancer among dying cancer patients-a cross-sectional study of hereditary risk and perceived awareness of DNA testing and banking. J Genet Couns 2010; 19: 497-525.
30. Prochniak CF, Martin LJ, Miller EM et al: Barriers to and motivations for physician referral of patients to cancer genetics clinics. J Genet Couns 2012; 21: 305-325.
31. Watson E, Austoker J, Lucassen A: A study of GP referrals to a family cancer clinic for breast/ovarian cancer. Fam Pract 2001; 18: 131-134.
32. van Riel E, van Dulmen S, Ausems MG: Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral. J Community Genet 2012; 3: 265-274.
33. Anderson B, McLosky J, Wasilevich E et al: Barriers and facilitators for utilization of genetic counseling and risk assessment services in young female breast cancer survivors. J Cancer Epidemiol 2012; 2012: 298745.
34. Bando H: Issues of concern in risk assessment, genetic counseling, and genetic testing of younger breast cancer patients in Japan. Breast Cancer 2013; 11: 11.
35. Atkin K, Ali N, Chu CE: The politics of difference? Providing a cancer genetics service in a culturally and linguistically diverse society. Divers Health Care 2009; 6: 149-157.
36. Appleby-Tagoe JH, Foulkes WD, Palma L: 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 2012; 21: 273-291.
37. Trivers KF, Baldwin L-M, Miller JW et al: Reported referral for genetic counseling or BRCA 1/2 testing among United States physicians. Cancer 2011; 117: 5334-5343.
38. Skirton H, Lewis C, Kent A et al: Genetic education and the challenge of genomic medicine: development of core competences to support preparation of health professionals in Europe. Eur J Hum Genet 2010; 18: 972-977.
39. Engstrom JL, Sefton MGS, Matheson JK et al: Genetic competencies essential for health care professionals in primary care. J Midwifery Women's Health 2005; 50: 177-183.
40. Suther S, Goodson P: Barriers to the provision of genetic services by primary care physicians: A systematic review of the literature. Genet Med 2003; 5: 70-76.
41. Pichert G, Dietrich D, Moosmann P et al: Swiss primary care physicians' knowledge, attitudes and perception towards genetic testing for hereditary breast cancer. Fam Cancer 2003; 2: 153-158.
42. Mehnert A, Bergelt C, Koch U: Knowledge and attitudes of gynecologists regarding genetic counseling for hereditary breast and ovarian cancer. Patient Educ Couns 2003; 49: 183-188.
43. Friedman LC, Cooper HP, Webb JA et al: Primary care physicians' attitudes and practices regarding cancer genetics: A comparison of 2001 with 1996 survey results. J Cancer Educ 2003; 18: 91-94.
44. Escher M, Sappino A-P: Primary care physicians' knowledge and attitudes towards genetic testing for breast-ovarian cancer predisposition. Ann Oncol 2000; 11: 1131-1135.
45. Acton RT, Burst NM, Casebeer L et al: Knowledge, attitudes, and behaviors of Alabama's primary care physicians regarding cancer genetics. Acad Med 2000; 75: 850-852.
46. Acheson LS, Stange KC, Zyzanski S: Clinical genetics issues encountered by family physicians. Genet Med 2005; 7: 501-508.
47. Wideroff L, Vadaparampil ST, Greene MH et al: Hereditary breast/ovarian and colorectal cancer genetics knowledge in a national sample of US physicians. J Med Genet 2005; 42: 749-755.
48. Sussner KM, Jandorf L, Thompson HS et al: Barriers and facilitators to BRCA genetic counseling among at-risk Latinas in New York City. Psychooncology 2013; 22: 1594-1604.
49. Qureshi N, Armstrong S, Modell B: GPs' opinions of their role in prenatal genetic services: A cross-sectional survey. Fam Prac 2006; 23: 106-110.
50. Chen M-J, Holt CL, Lose EJ et al: The use by Alabama pediatricians of genetics consultation in the evaluation of developmental delay. Am J Med Genet A 2008; 146A: 421-425.
51. Mouchawar J, Klein CE, Mullineaux L: Colorado family physicians' knowledge of hereditary breast cancer and related practice. J Cancer Educ 2001; 16: 33-37.
52. Baars MJH, Henneman L, ten Kate LP: Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: A global problem. Genet Med 2005; 7: 605-610.
53. Butler R, Dwosh E, Beattie BL et al: Genetic counseling for early-onset familial alzheimer disease in large aboriginal kindred from a remote community in British Columbia: unique challenges and possible solutions. J Genet Couns 2011; 20: 136-142.
54. Lowstuter KJ, Sand S, Blazer KR et al: Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinicians. Genet Med 2008; 10: 691-698.
55. Mittman IS, Bowie JV, Maman S: Exploring the discourse between genetic counselors and Orthodox Jewish community members related to reproductive genetic technology. Patient Educ Couns 2007; 65: 230-236.
56. Kinney AY, Gammon A, Coxworth J et al: Exploring attitudes, beliefs, and communication preferences of Latino community members regarding BRCA1/2 mutation testing and preventive strategies. Genet Med 2010; 12: 105-115.
57. Thompson HS, Valdimarsdottir HB, Duteau-Buck C et al: Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiol Biomarkers Prev 2002; 11: 1579-1585.
58. Ropka ME, Wenzel J, Phillips EK et al: Uptake rates for breast cancer genetic testing: A systematic review. Cancer Epidemiol Biomarkers Prev 2006; 15: 840-855.