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Fulltext Shared decision-making in Malaysia: Legislation, patient involvement, implementation and the impact of COVID-19

Lee YK, Ng CJ, Lee PY, Tong WT, Sa'at H

Z Evid Fortbild Qual Gesundhwes, 2022 Jun;171:89-92.
PMID: 35610129 DOI: 10.1016/j.zefq.2022.04.020

Shared decision making (SDM) activities in Malaysia began around 2010. The rise in the numbers of patients with chronic disease in Malaysia underscores a growing need for doctors to practice patient-centred care and SDM as more Malaysians come into regular contact with health decision-making scenarios. Recent guidelines for medical professionalism have emphasized that options and risks be discussed in consultations, especially for procedures with risk of adverse outcomes. Although SDM is not legally required, principles of SDM are applied in legal judgements on informed consent. Research on SDM has grown to include the adoption of patient and public involvement in research, an increased emphasis on incorporating local cultural values in SDM, and implementation of SDM in Malaysia's health system and organizational culture. While COVID-19 hindered the progress of SDM research, one positive development was that vaccination choices heightened public consciousness about personal decisional autonomy and the need to discuss pros and cons with doctors before making a medical decision.
The needs of Southeast Asian BRCA mutation carriers considering risk-reducing salpingo-oophorectomy: a qualitative study

Sa'at H, Lee YK, Yoon SY, Wong SW, Woo YL, Barlow-Stewart K, et al.

Fam Cancer, 2022 Jan;21(1):21-33.
PMID: 33604745 DOI: 10.1007/s10689-021-00232-6

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.
Decision-making for Risk-reducing Salpingo-oophorectomy (RRSO) in Southeast Asian BRCA Mutation Carriers With Breast Cancer: A Qualitative Study

Sa'at H, Lee YK, Yoon SY, Wong SW, Woo YL, Barlow-Stewart K, et al.

Int J Behav Med, 2022 Feb;29(1):1-13.
PMID: 33791992 DOI: 10.1007/s12529-021-09984-y

BACKGROUND: The uptake of risk-reducing salpingo-oophorectomy (RRSO) in Asian countries is variable despite being the most effective option for ovarian cancer risk reduction in BRCA mutation carriers. Exploration of factors which may impact the RRSO decision-making of BRCA mutation carriers from Malaysia, a developing country in Southeast Asia, was undertaken.
METHODS: In-depth interviews with 28 Malaysian BRCA mutation carriers with a history of breast cancer were conducted in addition to observing their RRSO decision-making consultations in the clinic.
RESULTS: The decision-making considerations among the carriers were centered around the overarching theme of "Negotiating cancer risk and womanhood priorities," with the following themes: (1) risk perception, (2) self-preservation, (3) motherhood obligation, and (4) the preciousness of marriage. Cognitive knowledge of BRCA risk was often conceptualized based on personal and family history of cancer, personal beliefs, and faith. Many women reported fears that RRSO would affect them physically and emotionally, worrying about the post-surgical impact on their motherhood responsibilities. Nevertheless, some reported feeling obliged to choose RRSO for the sake of their children. For some, their husband's support and approval were critical, with emotional well-being and sexuality reportedly perceived as important to sustaining married life. Despite reporting hesitancy toward RRSO, women's decisions about choosing this option evolved as their priorities changed at different stages of life.
CONCLUSIONS: Recognizing during clinic encounters with Malaysian women that RRSO decision-making involves negotiating the likelihood of developing cancer with the societal priorities of being a woman, mother, and wife may serve to support their decision-making.

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