The decision to have risk-reducing salpingo-oophorectomy (RRSO) by BRCA mutation carriers to reduce the risk of ovarian cancer is difficult. The choice involves trade-offs in terms of its risks and benefits. To date, understanding the decision-making needs of RRSO among Southeast Asian BRCA mutation carriers is limited. This study aimed to explore the decision-making needs of Malaysian BRCA mutation carriers as an exemplar for the Southeast Asian community. In-depth interviews and clinic observations were conducted with 31 BRCA mutation carriers and analysed thematically. The core theme identified was ‘Coping with complex information and alleviating uncertainties’ with the following subthemes: (1) the need for an adjustment period, (2) information support, (3) social support and, (4) religious support. We found that women required time to accept their BRCA mutation status before they were ready to make a risk-reducing choice; that understanding complex genetic information and multiple risk management options can be an overwhelming experience; and obtaining further information and a second opinion were challenging. Many described the need for experiential information from other peer-carriers who had undergone RRSO. Support from their spouse and family members was thought to be essential for them to feel reassured with their decision. Many relied on religion to positively cope with cancer risk and cancer worry; Muslim BRCA carriers sought religious guidance through prayers and Islamic fatwas to feel more certain about their RRSO decision. These findings underscore the importance of the provision of resources and support that includes input from peers, husband, family members and religion to underpin the decision-making needs of Malaysian BRCA mutation carriers considering RRSO.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Tax calculation will be finalised during checkout.
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
Tax calculation will be finalised during checkout.
Daly MB, Pilarski R, Berry M et al (2017) NCCN guidelines insights: genetic/familial high-risk assessment: breast and ovarian, version 2.2017. J Natl Compr Canc Netw 15(1):9–20. https://doi.org/10.6004/jnccn.2017.0003
Marchetti C, De Felice F, Palaia I et al (2014) Risk-reducing salpingo-oophorectomy: a meta-analysis on impact on ovarian cancer risk and all cause mortality in BRCA 1 and BRCA 2 mutation carriers. BMC Women’s Health. https://doi.org/10.1186/s12905-014-0150-5
Henderson JT, Webber EM, Sawaya GF (2018) Screening for ovarian cancer: updated evidence report and systematic review for the us preventive services task force. JAMA 319(6):595–606. https://doi.org/10.1001/jama.2017.21421
Arai M, Yokoyama S, Watanabe C et al (2017) Genetic and clinical characteristics in Japanese hereditary breast and ovarian cancer: first report after establishment of HBOC registration system in Japan. J Hum Genet 63(4):447. https://doi.org/10.1038/s10038-017-0355-1
Harmsen MG, Arts-de Jong M, Horstik K et al (2016) Very high uptake of risk-reducing salpingo-oophorectomy in BRCA1/2 mutation carriers: a single-center experience. Gynecol Oncol 143(1):113–119. https://doi.org/10.1016/j.ygyno.2016.07.104
Witt J, Elwyn G, Wood F, Rogers MT, Menon U, Brain K (2014) Adapting the coping in deliberation (CODE) framework: a multi-method approach in the context of familial ovarian cancer risk management. Patient Educ Couns 97(2):200–210. https://doi.org/10.1016/j.pec.2014.07.004
Ringwald J, Wochnowski C, Bosse K et al (2016) Psychological distress, anxiety, and depression of cancer-affected BRCA1/2 mutation carriers: a systematic review. J Genet Couns. https://doi.org/10.1007/s10897-016-9949-6
Farrelly A, White V, Meiser B et al (2013) Unmet support needs and distress among women with a BRCA1/2 mutation. Fam Cancer 12(3):509–518. https://doi.org/10.1007/s10689-012-9596-5
Lee YK, Ng CJ (2017) The state of shared decision making in Malaysia. Z Evid Fortbild Qual Gesundhwes 123–124:66–68. https://doi.org/10.1016/j.zefq.2017.05.019
Ng CJ, Lee PY, Lee YK et al (2013) An overview of patient involvement in healthcare decision-making: a situational analysis of the Malaysian context. BMC Health Serv Res. https://doi.org/10.1186/1472-6963-13-408
Alden DL, Friend JM, Lee AY, de Vries M, Osawa R, Chen Q (2015) Culture and medical decision making: healthcare consumer perspectives in Japan and the United States. Health Psychol 34(12):1133. https://doi.org/10.1037/hea0000229
Muhamad M, Afshari M, Kazilan F (2011) Family support in cancer survivorship. Asian Pac J Cancer Prev 12(6):1389–1397
Howard AF, Balneaves LG, Bottorff JL (2009) Women’s decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: a systematic review. J Genet Couns 18(6):578–597. https://doi.org/10.1007/s10897-009-9245-9
O’Connor AM, Tugwell P, Wells GA et al (1998) A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Couns 33(3):267–279. https://doi.org/10.1016/S0738-3991(98)00026-3
Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340. https://doi.org/10.1002/1098-240X(200008)23:4%3c334::AID-NUR9%3e3.0.CO;2-G
Witt J, Elwyn G, Wood F, Brain K (2012) Decision making and coping in healthcare: the Coping in Deliberation (CODE) framework. Patient Educ Couns 88(2):256–261. https://doi.org/10.1016/j.pec.2012.03.002
Department of Statistics Malaysia (2018) Current population estimates, Malaysia, 2017–2018. Department of Statistics Malaysia, Malaysia
Department of Statistics Malaysia (2011) Population distribution and basic demographic characteristic report 2010. Department of Statistics Malaysia, Malaysia
Thirthagiri E, Lee S, Kang P et al (2008) Evaluation of BRCA1 and BRCA2 mutations and risk-prediction models in a typical Asian country (Malaysia) with a relatively low incidence of breast cancer. Breast Cancer Res 10(4):R59. https://doi.org/10.1186/bcr2118
Tan M-M, Ho W-K, Yoon S-Y et al (2018) A case-control study of breast cancer risk factors in 7,663 women in Malaysia. PLoS ONE 13(9):e0203469. https://doi.org/10.1371/journal.pone.0203469
Nakamura S, Kwong A, Kim SW et al (2015) Current status of the management of hereditary breast and ovarian cancer in Asia: first report by the Asian BRCA consortium. Public Health Genomics 19(1):53–60. https://doi.org/10.1159/000441714
Patton MQ (1990) Qualitative evaluation and research methods. SAGE Publications Inc, Thousand Oaks
Spradley JP (1980) Doing participant observation. The United States of America
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oa
Braun V, Clarke V (2019) Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health 11(4):589–597. https://doi.org/10.1080/2159676X.2019.1628806
QSR International (2017) NVIVO qualitative analysis Software (Version 10) Melbourne; Pty Ltd
Guest G, Bunce A, Johnson L (2006) How many interviews are enough? An experiment with data saturation and variability. Field Methods 18(1):59–82. https://doi.org/10.1177/1525822X05279903
Dean M, Scherr CL, Clements M, Koruo R, Martinez J, Ross A (2017) “When information is not enough”: a model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk. Patient Educ Couns 100(9):1738–1743. https://doi.org/10.1016/j.pec.2017.03.013
Underhill ML, Crotser CB (2014) Seeking balance: decision support needs of women without cancer and a deleterious BRCA1 or BRCA2 mutation. J Genet Couns 23(3):350–362. https://doi.org/10.1007/s10897-013-9667-2
Cherry C, Ropka M, Lyle J, Napolitano L, Daly MB (2013) Understanding the needs of women considering risk-reducing salpingo-oophorectomy. Cancer Nurs 36(3):E33-38. https://doi.org/10.1097/NCC.0b013e3182642cb5
Howard AF, Bottorff JL, Balneaves LG, Kim-Sing C (2010) Women’s constructions of the “right time” to consider decisions about risk-reducing mastectomy and risk-reducing oophorectomy. BMC Womens Health 10:24. https://doi.org/10.1186/1472-6874-10-24
Young JL, Werner-Lin A, Mueller R, Hoskins L, Epstein N, Greene MH (2017) Longitudinal cancer risk management trajectories of BRCA1/2 mutation-positive reproductive-age women. J Psychosoc Oncol 35(4):393–408. https://doi.org/10.1080/07347332.2017.1292574
Hamilton RJ, Innella NA, Bounds DT (2016) Living with genetic vulnerability: a life course perspective. J Genet Couns 25(1):49–61. https://doi.org/10.1007/s10897-015-9877-x
Hamilton RJ, Innella NA, Bounds DT (2016) The life course perspective: a guide for genetic counselors. J Genet Couns 25(1):44–48. https://doi.org/10.1007/s10897-015-9878-9
Metcalfe K, Eisen A, Senter L et al (2019) International trends in the uptake of cancer risk reduction strategies in women with a BRCA1 or BRCA2 mutation. Br J Cancer 121(1):15–21. https://doi.org/10.1038/s41416-019-0446-1
Yoon SY, Thong MK, Taib NA, Yip CH, Teo SH (2011) Genetic counseling for patients and families with hereditary breast and ovarian cancer in a developing Asian country: an observational descriptive study. Fam Cancer 10(2):199–205. https://doi.org/10.1007/s10689-011-9420-7
Kuchenbaecker KB, Hopper JL, Barnes DR et al (2017) Risks of breast, ovarian, and contralateral breast cancer for BRCA1 and BRCA2 mutation carriers. JAMA 317(23):2402–2416. https://doi.org/10.1001/jama.2017.7112
Finch AP, Lubinski J, Moller P et al (2014) Impact of oophorectomy on cancer incidence and mortality in women with a BRCA1 or BRCA2 mutation. J Clin Oncol 32(15):1547–1553. https://doi.org/10.1200/JCO.2013.53.2820
Reyna VF (2008) A theory of medical decision making and health: fuzzy trace theory. Med Decis Making 28(6):850–865. https://doi.org/10.1177/0272989X08327066
Werner-Lin A (2008) Formal and informal support needs of young women with BRCA mutations. J Psychosoc Oncol 26(4):111–133. https://doi.org/10.1080/07347330802359776
Dean M, Davidson LG (2018) Previvors’ uncertainty management strategies for hereditary breast and ovarian cancer. Health Commun 33(2):122–130. https://doi.org/10.1080/10410236.2016.1250187
Ellison CG, Levin JS (1998) The religion-health connection: evidence, theory, and future directions. Health Educ Behav 25(6):700–720. https://doi.org/10.1177/109019819802500603
Schwartz MD, Hughes C, Roth J et al (2000) Spiritual faith and genetic testing decisions among high-risk breast cancer probands. Cancer Epidemiol Biomark Prev 9(4):381–385
Mohd Azizi FS, Kew Y, Moy FM (2017) Vaccine hesitancy among parents in a multi-ethnic country, Malaysia. Vaccine 35(22):2955–2961. https://doi.org/10.1016/j.vaccine.2017.04.010
Lee YK, Low WY, Ng CJ (2013) Exploring patient values in medical decision making: a qualitative study. PLoS ONE 8(11):e80051. https://doi.org/10.1371/journal.pone.0080051
Mrayyan MT, Shawish M (2020) Prophylactic mastectomy and salpingo-oophorectomy: ethics and policy. Middle East J Cancer 11(1):114–119. https://doi.org/10.30476/MEJC.2019.78702.0
Rodin D, Balboni M, Mitchell C, Smith PT, VanderWeele TJ, Balboni TA (2015) Whose role? Oncology practitioners’ perceptions of their role in providing spiritual care to advanced cancer patients. Support Care Cancer 23(9):2543–2550. https://doi.org/10.1007/s00520-015-2611-2
Shaw T, Ishak D, Lie D et al (2018) The influence of Malay cultural beliefs on breast cancer screening and genetic testing: a focus group study. Psychooncology 27(12):2855–2861. https://doi.org/10.1002/pon.4902
Zulkipli AF, Islam T, Mohd Taib NA et al (2018) Use of complementary and alternative medicine among newly diagnosed breast cancer patients in Malaysia: an early report from the MyBCC Study. Integr Cancer Ther 17(2):312–321. https://doi.org/10.1177/1534735417745248
Norsa’adah B, Rahmah MA, Rampal KG, Knight A (2012) Understanding barriers to Malaysian women with breast cancer seeking help. Asian Pac J Cancer Prev 13(8):3723–3730. https://doi.org/10.7314/apjcp.2012.13.8.3723
Yu FQ, Murugiah MK, Khan AH, Mehmood T (2015) Meta-synthesis exploring barriers to health seeking behaviour among Malaysian breast Cancer patients. Asian Pac J Cancer Prev 16(1):145–152. https://doi.org/10.7314/apjcp.2015.16.1.145
Alden DL, Friend J, Lee PY et al (2018) Who decides: me or we? Family involvement in medical decision making in eastern and western countries. Med Decis Making 38(1):14–25. https://doi.org/10.1177/0272989x17715628
Osamor PE, Grady C (2018) Autonomy and couples’ joint decision-making in healthcare. BMC Med Ethics 19(1):3. https://doi.org/10.1186/s12910-017-0241-6
Kim HK, Lwin MO (2017) Cultural effects on cancer prevention behaviors: fatalistic cancer beliefs and risk optimism among Asians in Singapore. Health Commun 32(10):1201–1209. https://doi.org/10.1080/10410236.2016.1214224
Davis JL, Buchanan KL, Green BL (2013) Racial/ethnic differences in cancer prevention beliefs: applying the health belief model framework. Am J Health Promot 27(6):384–389. https://doi.org/10.4278/ajhp.120113-QUAN-15
Zhang L, Shin VY, Chai X et al (2018) Breast and ovarian cancer penetrance of BRCA1/2 mutations among Hong Kong women. Oncotarget 9(38):25025–25033. https://doi.org/10.18632/oncotarget.24382
Stacey D, Légaré F, Lewis K et al (2017) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 4(4):CD001431. https://doi.org/10.1002/14651858.CD001431.pub5
This study is funded by Terry Fox Run-Cancer Research Malaysia research grant, University Malaya Postgraduate Research Grant (PPP)—Research (PG0752016A), and High Impact Research Grant from Ministry of Education Malaysia (UM.C/HIR/MOHE/06). We would like to thank the participants who contributed to this study.
This study was funded by Terry Fox Run-Cancer Research Malaysia Research Grant, University Malaya Postgraduate Research grant (PPP)—Research (PG075-2016A), and High Impact Research Grant UM.C/HIR/MOHE/06 from Ministry of Higher Education Malaysia.
Conflict of interest
All authors declare that they have no conflict of interest to declare.
Ethics approval was obtained from the Medical Research Ethics Committee, University of Malaya Medical Centre (MEC identification number: 20144-141 & 20161-1995). All procedures performed in studies involving human participants were in accordance with the ethical standards of the Medical Research Ethics Committee, University of Malaya Medical Centre and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
About this article
Cite this article
Sa’at, H., Lee, YK., Yoon, SY. et al. The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study. Familial Cancer (2021). https://doi.org/10.1007/s10689-021-00232-6
- BRCA mutation carriers
- Risk-reducing salpingo-oophorectomy
- Medical decision-making
- Southeast Asia