Identifying Needs: a Qualitative Study of women's Experiences Regarding Rapid Genetic Testing for Hereditary Breast and Ovarian Cancer in the DNA BONus Study

被引:17
作者
Augestad, Mirjam Tonheim [1 ,2 ]
Hoberg-Vetti, Hildegunn [1 ,2 ]
Bjorvatn, Cathrine [1 ,2 ,3 ]
Sekse, Ragnhild Johanne Tveit [3 ,4 ]
机构
[1] Haukeland Hosp, Western Norway Familial Canc Ctr, Haukelandsveien 22,POB 1400, N-5021 Bergen, Norway
[2] Haukeland Hosp, Ctr Med Genet & Mol Med, Bergen, Norway
[3] Univ Bergen, Dept Clin Sci, Bergen, Norway
[4] Haukeland Hosp, Dept Obstet & Gynecol, Bergen, Norway
关键词
Rapid genetic testing; BRCA; 1/2; Genetic information; Newly-diagnosed breast and ovarian cancer; Personalized support and counselling; PSYCHOLOGICAL IMPACT; BRCA2; MUTATIONS; CARRIERS; TIME; AGE;
D O I
10.1007/s10897-016-9996-z
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Genetic testing for hereditary breast and ovarian cancer is increasingly being offered in newly diagnosed breast and ovarian cancer patients. This genetic information may influence treatment decisions. However, there are some concerns that genetic testing offered in an already vulnerable situation might be an extra burden to these women. The aim of this study was to explore the experiences of women who had been offered and accepted genetic testing when newly diagnosed with breast or ovarian cancer. Four semi-structured focus-group interviews were conducted with 17 women recruited from a Norwegian multicenter study. The material was condensed, and conventional qualitative analysis was used to identify patterns in the participants' descriptions. Three core themes were identified: 1) being "beside oneself" 2) altruism and ethical dilemmas 3) the need for support and counselling to assist the decision process. The present study indicates that women who are offered genetic testing when newly diagnosed with breast or ovarian cancer want a consultation with a health professional. Personalized support and counselling might empower women to improve their ability to manage and comprehend this overwhelming situation, and find meaning in this experience.
引用
收藏
页码:182 / 189
页数:8
相关论文
共 32 条
  • [1] BRCA Mutation Frequency and Patterns of Treatment Response in BRCA Mutation-Positive Women With Ovarian Cancer: A Report From the Australian Ovarian Cancer Study Group
    Alsop, Kathryn
    Fereday, Sian
    Meldrum, Cliff
    deFazio, Anna
    Emmanuel, Catherine
    George, Joshy
    Dobrovic, Alexander
    Birrer, Michael J.
    Webb, Penelope M.
    Stewart, Colin
    Friedlander, Michael
    Fox, Stephen
    Bowtell, David
    Mitchell, Gillian
    [J]. JOURNAL OF CLINICAL ONCOLOGY, 2012, 30 (21) : 2654 - 2663
  • [2] Antonovsky A., 1987, Unravelling the mystery of health: how people manage stress and stay well
  • [3] 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
    Ardern-Jones, A
    Kenen, R
    Eeles, R
    [J]. EUROPEAN JOURNAL OF CANCER CARE, 2005, 14 (03) : 272 - 281
  • [4] The Trajectory of Psychological Impact in BRCA1/2 Genetic Testing: Does Time Heal?
    Beran, Tammy M.
    Stanton, Annette L.
    Kwan, Lorna
    Seldon, Joyce
    Bower, Julienne E.
    Vodermaier, Andrea
    Ganz, Patricia A.
    [J]. ANNALS OF BEHAVIORAL MEDICINE, 2008, 36 (02) : 107 - 116
  • [5] Breast and ovarian cancer risks in a large series of clinically ascertained families with a high proportion of BRCA1 and BRCA2 Dutch founder mutations
    Brohet, Richard M.
    Velthuizen, Maria E.
    Hogervorst, Frans B. L.
    Meijers-Heijboer, Hanne E. J.
    Seynaeve, Caroline
    Collee, Margriet J.
    Verhoef, Senno
    Ausems, Margreet G. E. M.
    Hoogerbrugge, Nicoline
    van Asperen, Christi J.
    Garcia, Encarna Gomez
    Menko, Fred
    Oosterwijk, Jan C.
    Devilee, Peter
    van't Veer, Laura J.
    van Leeuwen, Flora E.
    Easton, Douglas F.
    Rookus, Matti A.
    Antoniou, Antonis C.
    [J]. JOURNAL OF MEDICAL GENETICS, 2014, 51 (02) : 98 - 107
  • [6] Psychological responses to BRCA1 mutation testing: Preliminary findings
    Croyle, RT
    Smith, KR
    Botkin, JR
    Baty, B
    Nash, J
    [J]. HEALTH PSYCHOLOGY, 1997, 16 (01) : 63 - 72
  • [7] The dilemmas of a carrier of BRCA1 gene mutations
    de Vries-Kragt, K
    [J]. PATIENT EDUCATION AND COUNSELING, 1998, 35 (01) : 75 - 80
  • [8] Di Prospero LS, 2001, CAN MED ASSOC J, V164, P1005
  • [9] Living with the BRCA genetic mutation: An uncertain conclusion to an unending process
    DiMillo, J.
    Samson, A.
    Theriault, A.
    Lowry, S.
    Corsini, L.
    Verma, S.
    Tomiak, E.
    [J]. PSYCHOLOGY HEALTH & MEDICINE, 2013, 18 (02) : 125 - 134
  • [10] The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers
    Esplen, Mary Jane
    Stuckless, Noreen
    Hunter, Jonathan
    Liede, Alexander
    Metcalfe, Kelly
    Glendon, Gordon
    Narod, Steven
    Butler, Kate
    Scott, Jenna
    Irwin, Ellen
    [J]. PSYCHO-ONCOLOGY, 2009, 18 (11) : 1216 - 1229