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

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-10-01 Epub Date: 2024-09-25 DOI:10.1007/s12687-024-00735-6
Fatma Aldila, Fiona Ng Fj, Jessica Audrienna, Lynn Lim Sj, Shannon Tang, Sabrina Gabriel Tanu, Eric Aria Fernandez, Faustina Audrey Agatha, Marco Wijaya, Stevany Tiurma Br Sormin, Levana Sani, Astrid Irwanto, Samuel J Haryono, Jingmei Li, Alexandre Chan, Mikael Hartman
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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.

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女性希望在个性化乳腺癌风险报告中看到什么?对两个国家的亚洲妇女进行的定性研究。
针对亚洲人群的乳腺癌风险评估工具已建立并通过验证,该工具结合了多基因风险评分和盖尔模型算法。然而,传递个性化风险信息的有效方法仍未得到充分探索。本研究旨在确定和开发向亚洲女性传递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 名妇女进行 10 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。参与者更喜欢全面的报告,其中包括可操作的步骤、简化的语言、非恐吓性的视觉效果以及个性化的降低风险建议。与印尼人相比,新加坡人的乳腺癌预防意识更强,但在收到低风险结果后寻求后续治疗的可能性较低。总的来说,参与者认为报告很有用,并主张在其他疾病评估中采用类似的方法。平衡报告的内容和复杂性至关重要,这突出表明需要加强患者对医疗服务提供者的理解和参与。未来的研究可以探讨医生在提供个性化风险评估以预防乳腺癌方面的作用。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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