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助成対象詳細(Details)

   

2016 研究助成 Research Grant Program  /  (B)個人研究助成  (B) Individual Research Grants
助成番号
(Grant Number)
D16-R-0408
題目
(Project Title)
BRCA遺伝子変異を持つ女性の乳がん発症を防ぐための意思決定方法に関する新しい価値の考察
Exploring a New Value of Shared Decision-making for Prevention of Breast Cancer in Women with BRCA Gene Mutations
代表者名
(Representative)
ヨー・カー・シー
Yeoh Kar See
代表者所属
(Organization)
マラヤ大学医学部
Faculty of Medicine, University of Malaya
助成金額
(Grant Amount)
 1,300,000
企画書・概要 (Abstract of Project Proposal)

    世界のどの国においても、乳がんは女性が最もかかりやすいがんである。とりわけBRCA(乳がん)遺伝子変異を持つ女性は、そうでない女性に比べて乳がんを発症するリスクが非常に高い。発症リスクを下げる治療法は多岐にわたり、それが体に与える影響もさまざまである。したがってその両方を考慮した上で治療方針を決めなければならないが、周囲からの差別や「がん患者」という烙印を押されることを恐れて、乳がん予防に向けた治療に対して及び腰になる女性は少なくない。意思決定に対する支援体制も不十分である。パターナリズム (父権主義)が根強い医療の世界では、医師は女性にとって専門家あるいは絶対的な存在であり、意思決定が受け身になる傾向がある。
    そこで本研究では、医師と患者とで意思決定を行うことにより、乳がん発症リスクを減らし、女性のQOL(生活の質)を向上させることをめざす。具体的には、その国の文化、言語、乳がん予防のためのヘルスリテラシー などを勘案した意思決定支援ツールを開発し、試験運用を行った上で医師に配布する。また同ツールに関する情報提供サイトも立ち上げる。
    本プロジェクトによって、将来世代を含む全ての女性が不安のない環境で医師と共に意思決定を行い、自分自身の価値観や目標、好みに合った決断ができるよう手助けしたい。
 

    Breast cancer is the most common cancer in women worldwide. Women with inherited BReast CAncer (BRCA) gene mutations have a very high risk of developing breast cancer compared to the general population. To reduce their risks of breast cancer, women have to face difficult decisions on multiple complex medical options and health outcomes. However, the threat of discrimination and stigma compromises her ability to take full advantage of her medical options to prevent breast cancer. Also, women are not provided with decision support to facilitate their decision-making process. Cultural paternalism is common, whereby women view clinicians as the expert or authority, and are often passive during decision-making. 
    Thus, this research aims to reduce breast cancer risk and improve quality of life for women through a new value of shared decision-making with their clinicians. To achieve this objective, a decision aid that integrates culture, language and health literacy for breast cancer prevention will be developed, pilot-tested and distributed to clinicians. A resource website for the decision aid will also be developed.
    This project expects to empower women and their future generations towards decisions that are more aligned to their personal values, goals and preferences through shared decision-making in a safe environment.

実施報告書・概要 (Summary of Final Report)



Project Summary
Women with inherited BRCA genetic change have a very high risk of developing breast cancer compared to the general population. To reduce their risks of breast cancer, women face difficult decisions on multiple complex medical options (screening, medication and preventive surgery) and health outcomes.

This presents unique medical and psychosocial challenges to women’s decision-making without the benefits of any appropriate decision support to facilitate their decision-making process. Thus, this research aims to reduce the risk of breast cancer and improve quality of life for women with a BRCA genetic change through a new value of shared decision-making between clinicians and women.

To achieve this objective, a BReast CAncer prevention Decision Aid (BRCADA) for women with a BRCA genetic change was developed, field-tested and distributed to clinicians in Malaysia. A resource website (https://brcada.um.edu.my) was also developed to provide information about the different breast cancer preventive options that are available, and to help women clarify their values, concerns and support system that are important to their decision-making.

To guide the development of BRCADA, a qualitative study was conducted to understand clinicians’ and women’s perspectives about how BRCA carriers perceive their breast cancer risk and decide on preventive options available to them. In-depth interviews were conducted with 32 clinicians and 35 women with a BRCA genetic change from 19 sites in Malaysia.

Findings indicate that cancer risk is not a well-understood concept among BRCA carriers in Malaysia. Most women correctly perceived that they have a higher risk of developing breast cancer, while others perceived that they have the same risk as the general population. However, majority did not know the breast cancer risk estimates of their carrier status. They either overestimated or underestimated their lifetime risk for breast cancer, which affected their decision-making on preventive options.

Women have diverging values and beliefs regarding importance of breasts, keeping/ removing healthy breasts and the different breast cancer preventive options, which influenced their decision-making. Women’s fears and concerns, and their support system also influenced their decision-making regarding breast cancer prevention.

Women viewed their healthy breasts on an implicit continuum between two divergent conceptualizations, “Why remove something that is healthy?” and “Life and peace of mind from cancer worry are more important than breasts”.

On one end of the spectrum, breasts are regarded as important for a woman’s self-esteem and body image. Women refused preventive surgery as they want to keep their healthy breasts. Many factors influenced women’s choice to keep her healthy breasts. The two most significant factors are consideration for significant others, and beliefs in God and fate.

In contrast, on the other end of the spectrum, women regarded life as the most important thing, so they chose life, health and survival over their breasts. Surgical removal of healthy breasts was conceptualized as peace of mind from cancer worry. Women who chose surgery believe that it’s not worth taking the risk of developing breast cancer by keeping their healthy breasts.

These findings informed the systematic development of BRCADA. BRCADA is divided into different sections – breast cancer risk, managing your risk, breast reconstruction and your decision-making.

BRCADA was field-tested with 51 clinicians and 20 women with a BRCA genetic change from 22 sites in Malaysia. Preliminary findings show that overall, both clinicians and women perceived that BRCADA is useful in preparing BRCA carriers to communicate with their surgeons at a consultation visit, and to make a health decision on breast cancer prevention. Most (98%) clinicians also perceived that using BRCADA would result in their patients making more informed decisions.

This result is consistent with the high scores obtained for the decision aid acceptability measures. Both clinicians and women found BRCADA to be easy to understand, balanced, visually appealing with helpful graphics and just right in length.

From a scale of 1 (very dissatisfied) to 10 (very satisfied), all women rated their satisfaction as 8 and above, with a median score of 9 (interquartile range, IQR 8 to 10). Using BRCADA results in significant improvements in women’s risk perception of breast cancer (p = 0.001) and knowledge of breast cancer preventive options (p < 0.001).

All clinicians felt they would be comfortable offering BRCADA to their patients. Both clinicians and women would recommend the decision aid to BRCA carriers who are considering breast cancer preventive options.

Following the findings from field-testing, a final version of BRCADA was printed and distributed to clinicians in Malaysia.

Outputs
1. A decision aid in three languages (English, Malay and Mandarin):
a. BRCADA for Women with a BRCA1 / BRCA2 Genetic Change
b. Pencegahan Kanser Payudara – Alat Bantu Pembuatan Keputusan untuk Wanita yang Mempunyai Perubahan Genetik BRCA1 / BRCA2
c. 预防乳癌的辅助决策指南 – 给拥有 BRCA1 / BRCA2 基因突变的女性
2. The BRCADA Website (https://brcada.um.edu.my).

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