A qualitative study on decision-making about BRCA1/2 testing in Italian women

被引:11
|
作者
Battistuzzi, Linda [1 ,2 ]
Franiuk, Marzena [3 ]
Kasparian, Nadine [4 ,5 ,6 ]
Rania, Nadia [7 ]
Migliorini, Laura [7 ]
Varesco, Liliana [3 ]
机构
[1] Univ Genoa, Dept Informat Bioengn Robot & Syst Engn, Via Opera Pia 13, I-16145 Genoa, Italy
[2] Univ Genoa, Dept Internal Med & Med Specialties, Genoa, Italy
[3] San Martino Polyclin Hosp, Unit Hereditary Canc, Genoa, Italy
[4] Harvard Univ, Harvard Med Sch, Boston, MA 02115 USA
[5] Boston Childrens Hosp, Dept Cardiol, Boston, MA USA
[6] UNSW Sydney, UNSW Med, Sch Womens & Childrens Hlth, Discipline Paediat, Sydney, NSW, Australia
[7] Univ Genoa, Dept Educ Sci, Genoa, Italy
关键词
BRCA1; 2; culture; decision-making; ethics; genetic counseling; qualitative research; BREAST-CANCER; FAMILY; COMMUNICATION; INFORMATION; MUTATION; RESPONSIBILITY; FAMILIALISM; EXPERIENCES; VARIETIES; ATTITUDES;
D O I
10.1111/ecc.13083
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Objective In the era of cancer panel testing, new models of genetic counselling providing effective decision-making support are needed. As little is known about Southern European patients' and families' needs and experiences in this regard, we explored Italian women's experiences of clinical BRCA1/2 counselling and testing. Methods We interviewed 19 Italian women with a strong family history but no personal history of cancer who had had clinical BRCA1/2 testing. Interviews were recorded and transcribed, and qualitative data were organised into themes. Results Most respondents had decided to pursue testing before pre-test counselling. Although half the sample reported having reached the decision without thinking through its implications, most participants qualified their choice as unequivocally "the right one." Conclusion A subset of Italian women may arrive at their first cancer genetic consultation having already made a firm decision about testing. To empower women's decision-making, new models of cancer genetic counselling could usefully take into account differences in how they approach the testing process. This includes understanding decision-making from different cultural perspectives. In familistic countries like Italy, for example, decisional support may involve exploring widely shared assumptions regarding responsibilities towards family members and the prioritisation of family over self.
引用
收藏
页数:9
相关论文
共 50 条
  • [41] BRCA1 and BRCA2 Mutation Testing in Young Women With Breast Cancer
    Rosenberg, Shoshana M.
    Ruddy, Kathryn J.
    Tamimi, Rulla M.
    Gelber, Shari
    Schapira, Lidia
    Come, Steven
    Borges, Virginia F.
    Larsen, Bryce
    Garber, Judy E.
    Partridge, Ann H.
    JAMA ONCOLOGY, 2016, 2 (06) : 730 - 736
  • [42] Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial
    Kautz-Freimuth, Sibylle
    Shukri, Arim
    Stracke, Claudia
    Isselhard, Anna
    Berger-Hoeger, Birte
    Steckelberg, Anke
    Vitinius, Frank
    Dikow, Nicola
    Kiechle, Marion
    Meisel, Cornelia
    Woeckel, Achim
    von Mackelenbergh, Marion Tina
    Schmutzler, Rita
    Rhiem, Kerstin
    Stock, Stephanie
    BMC CANCER, 2025, 25 (01)
  • [43] Decision Coaching for Healthy Women With BRCA1/2 Pathogenic Variants
    Stock, Stephanie
    Isselhard, Anna
    Shukri, Arim
    Kautz-Freimuth, Sibylle
    Rhiem, Kerstin
    DEUTSCHES ARZTEBLATT INTERNATIONAL, 2024, 121 (12):
  • [44] The use of heuristics in genetic testing decision-making: A qualitative interview study
    Zimmermann, Bettina Maria
    Shaw, David Martin
    Elger, Bernice
    Kone, Insa
    PLOS ONE, 2021, 16 (11):
  • [45] Effects of guided imagery on women considering BRCA1/BRCA2 testing: A feasibility study.
    McGregor, BA
    Fishbach, A
    Bowen, DJ
    Valley, D
    Ludman, E
    Leppig, KA
    McAuliffe, L
    AMERICAN JOURNAL OF HUMAN GENETICS, 2003, 73 (05) : 363 - 363
  • [46] A review of BRCA1 & BRCA2 testing
    Lillis, S
    Mattocks, C
    Tarpey, P
    Daboo, L
    Whittaker, J
    JOURNAL OF MEDICAL GENETICS, 2003, 40 : S72 - S72
  • [47] Impact of preoperative BRCA1/2 testing on surgical decision making in patients with newly diagnosed breast cancer
    Yadav, Siddhartha
    Jinna, Sruthi
    Pereira-Rodrigues, Otavio
    Reeves, Ashley
    Campian, Sarah
    Sufka, Amy
    Zakalik, Dana
    BREAST JOURNAL, 2018, 24 (04): : 541 - 548
  • [48] Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk
    Hughes, C
    GomezCaminero, A
    Benkendorf, J
    Kerner, J
    Isaacs, C
    Barter, J
    Lerman, C
    PATIENT EDUCATION AND COUNSELING, 1997, 32 (1-2) : 51 - 62
  • [49] A computer-based decision aid is an effective tool for educating women seeking information about BRCA1/2 genetic testing.
    Green, MJ
    Peterson, SK
    Baker, MW
    Harper, GR
    Friedman, LC
    Rubinstein, WS
    Mauger, DT
    JOURNAL OF GENERAL INTERNAL MEDICINE, 2004, 19 : 110 - 110
  • [50] A qualitative study of women's decision-making at the end of IVF treatment
    Peddie, VL
    van Teijlingen, E
    Bhattacharya, S
    HUMAN REPRODUCTION, 2005, 20 (07) : 1944 - 1951