دورية أكاديمية
أعرض في EDS

Universal BRCA1/BRCA2 Testing for Ovarian Cancer Patients is Welcomed, but with Care: How Women and Staff Contextualize Experiences of Expanded Access.

التفاصيل البيبلوغرافية
العنوان: Universal BRCA1/BRCA2 Testing for Ovarian Cancer Patients is Welcomed, but with Care: How Women and Staff Contextualize Experiences of Expanded Access.
المؤلفون: Shipman H; Department of Medical Genetics and National Institute for Health Research Cambridge Biomedical Research Centre, University of Cambridge, Cambridge, UK. shipmanh@hku.hk.; School of English, The University of Hong Kong, 8.49 8/F Run Run Shaw Tower, Centennial Campus, Pokfulam Road, Hong Kong, China. shipmanh@hku.hk., Flynn S; Chester Research Unit for the Psychology of Health (CRUPH), Department of Psychology, University of Chester, Chester, UK., MacDonald-Smith CF; Chester Research Unit for the Psychology of Health (CRUPH), Department of Psychology, University of Chester, Chester, UK.; North Wales Cancer Treatment Centre, Glan Clwyd Hospital, North Wales, UK., Brenton J; Cancer Services, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.; Cancer Research UK Cambridge Research Institute, Cambridge, UK., Crawford R; Cancer Services, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK., Tischkowitz M; Department of Medical Genetics and National Institute for Health Research Cambridge Biomedical Research Centre, University of Cambridge, Cambridge, UK.; East Anglian Medical Genetics Service, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK., Hulbert-Williams NJ; Chester Research Unit for the Psychology of Health (CRUPH), Department of Psychology, University of Chester, Chester, UK.
مؤلفون مشاركون: GTEOC Study Group
المصدر: Journal of genetic counseling [J Genet Couns] 2017 Dec; Vol. 26 (6), pp. 1280-1291. Date of Electronic Publication: 2017 May 24.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: Wiley Country of Publication: United States NLM ID: 9206865 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1573-3599 (Electronic) Linking ISSN: 10597700 NLM ISO Abbreviation: J Genet Couns Subsets: MEDLINE
أسماء مطبوعة: Publication: 2019- : [Hoboken, NJ] : Wiley
Original Publication: New York, N.Y. : Human Sciences Press, c1992-
مواضيع طبية MeSH: Genes, BRCA1* , Genes, BRCA2*, Genetic Testing/*statistics & numerical data , Health Services Accessibility/*statistics & numerical data , Ovarian Neoplasms/*genetics, Adult ; Aged ; Breast Neoplasms/genetics ; Carcinoma, Ovarian Epithelial ; Female ; Genetic Predisposition to Disease ; Humans ; Middle Aged ; Mutation ; Neoplasms, Glandular and Epithelial ; Ovarian Neoplasms/diagnosis
مستخلص: Decreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients' and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives' influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a 'family affair' and staff must acknowledge this.
References: J Med Genet. 2016 Oct;53(10 ):655-61. (PMID: 27208206)
Breast Cancer Res Treat. 2008 Jun;109(3):507-14. (PMID: 17674198)
JAMA. 2010 Sep 1;304(9):967-75. (PMID: 20810374)
Br J Cancer. 2014 Feb 18;110(4):1081-7. (PMID: 24423928)
Gynecol Oncol. 2012 Jan;124(1):153-7. (PMID: 22032838)
BMJ Open. 2015 Nov 30;5(11):e007618. (PMID: 26621509)
J Clin Oncol. 2008 Mar 10;26(8):1331-7. (PMID: 18268356)
Gynecol Oncol. 2009 Jan;112(1):68-72. (PMID: 19019415)
Eur J Cancer. 2006 Nov;42(16):2722-8. (PMID: 16949277)
J Med Ethics. 2003 Apr;29(2):74-9; discussion 80-3. (PMID: 12672886)
J Genet Couns. 2017 Feb;26(1):182-189. (PMID: 27465808)
Lancet Oncol. 2014 Jul;15(8):852-61. (PMID: 24882434)
Genet Med. 2016 Feb;18(2):137-44. (PMID: 25905441)
Qual Health Res. 2006 Jan;16(1):97-118. (PMID: 16317179)
BMC Public Health. 2014 Sep 08;14:930. (PMID: 25200245)
Eur J Cancer Care (Engl). 2005 Jul;14(3):272-81. (PMID: 15952973)
J Med Ethics. 2006 Nov;32(11):635-8. (PMID: 17074820)
Lancet Oncol. 2011 Sep;12(9):852-61. (PMID: 21862407)
Oncol Nurs Forum. 2013 May 1;40(3):275-83. (PMID: 23619104)
Psychooncology. 2009 Sep;18(9):965-73. (PMID: 19140177)
Gynecol Oncol. 2011 May 1;121(2):353-7. (PMID: 21324516)
Med Humanit Rev. 1987 Jan;1(1):78-82. (PMID: 11621442)
Support Care Cancer. 2012 Nov;20(11):2949-58. (PMID: 22441502)
J Natl Cancer Inst. 2009 Jan 21;101(2):80-7. (PMID: 19141781)
N Engl J Med. 2012 Apr 12;366(15):1382-92. (PMID: 22452356)
فهرسة مساهمة: Keywords: BRCA1; BRCA2; Genetic counseling; Interpretive phenomenological analysis (IPA); Oncology; Ovarian cancer; UK
تواريخ الأحداث: Date Created: 20170526 Date Completed: 20180528 Latest Revision: 20220410
رمز التحديث: 20231215
DOI: 10.1007/s10897-017-0108-5
PMID: 28540621
قاعدة البيانات: MEDLINE
الوصف
تدمد:1573-3599
DOI:10.1007/s10897-017-0108-5