The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study

Abstract

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.

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Acknowledgements

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.

Funding

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.

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HS, YKL, SYY, YLW, KB-S, and NAMT were involved in study conception and design. HS and SWW conducted interviews and clinic observation. HS, SWW, YKL, and NAMT participated in data analysis and interpretation. The overall study was supervised by YKL and NAMT. HS drafted the first version of the manuscript. All authors read and critically reviewed the content of the draft and approved the final manuscript. The authors declare no conflict of interest.

Corresponding author

Correspondence to Nur Aishah Mohd Taib.

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Ethical approval

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.

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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

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Keywords

  • BRCA mutation carriers
  • Risk-reducing salpingo-oophorectomy
  • Medical decision-making
  • Southeast Asia