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女性希望在个性化乳腺癌风险报告中看到什么?对两个国家亚洲女性的定性研究。

What do women want to see in a personalized breast cancer risk report? A qualitative study of Asian women of two countries.

作者信息

Aldila Fatma, Fj Fiona Ng, Audrienna Jessica, Sj Lynn Lim, Tang Shannon, Tanu Sabrina Gabriel, Fernandez Eric Aria, Agatha Faustina Audrey, Wijaya Marco, Sormin Stevany Tiurma Br, Sani Levana, Irwanto Astrid, Haryono Samuel J, Li Jingmei, Chan Alexandre, Hartman Mikael

机构信息

NalaGenetics Pte Ltd (NalaGenetics), Bukit merah, Singapore.

SJH Initiatives, MRCCC Siloam Hospitals Semanggi, Jakarta, Indonesia.

出版信息

J Community Genet. 2024 Oct;15(5):517-528. doi: 10.1007/s12687-024-00735-6. Epub 2024 Sep 25.

Abstract

A breast cancer risk assessment tool for Asian populations, incorporating Polygenic Risk Score and Gail Model algorithm, has been established and validated. However, effective methods for delivering personalized risk information remain underexplored. This study aims to identify and develop effective methods for conveying breast cancer risk information to Asian women. Through ten focus group discussions with 32 women in Indonesia and Singapore, we explored preferences for the presentation of risk information. Participants favored comprehensive reports featuring actionable steps, simplified language, non-intimidating visuals, and personalized risk reduction recommendations. Singaporean participants, more aware of breast cancer prevention, showed a lower likelihood of seeking follow-ups upon receiving low-risk results compared to Indonesians. Overall, participants found the reports useful and advocated for similar approaches in other disease assessments. Balancing content and complexity in reports is crucial, highlighting the need for improved patient understanding and engagement with healthcare providers. Future studies could explore physicians' roles in delivering personalized risk assessments for breast cancer prevention.

摘要

一种结合多基因风险评分和盖尔模型算法的亚洲人群乳腺癌风险评估工具已经建立并得到验证。然而,提供个性化风险信息的有效方法仍未得到充分探索。本研究旨在确定并开发向亚洲女性传达乳腺癌风险信息的有效方法。通过与印度尼西亚和新加坡的32名女性进行十次焦点小组讨论,我们探讨了她们对风险信息呈现方式的偏好。参与者青睐包含可采取行动步骤、简化语言、不具威慑力的视觉效果以及个性化风险降低建议的综合报告。与印度尼西亚人相比,对乳腺癌预防更为了解的新加坡参与者在收到低风险结果后寻求后续跟进的可能性较低。总体而言,参与者认为这些报告很有用,并主张在其他疾病评估中采用类似方法。在报告中平衡内容和复杂性至关重要,这凸显了提高患者对医疗保健提供者的理解和参与度的必要性。未来的研究可以探讨医生在提供乳腺癌预防个性化风险评估中的作用。

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本文引用的文献

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Breast cancer risk stratification using genetic and non-genetic risk assessment tools for 246,142 women in the UK Biobank.
Genet Med. 2023 Oct;25(10):100917. doi: 10.1016/j.gim.2023.100917. Epub 2023 Jun 16.
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Barriers to breast cancer screening in Singapore: A literature review.
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Use and Applicability of the Gail Model to Calculate Breast Cancer Risk: A Scoping Review.
Asian Pac J Cancer Prev. 2022 Apr 1;23(4):1117-1123. doi: 10.31557/APJCP.2022.23.4.1117.

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