Comprehensive Breast Health Center, Department of Surgery, Taipei Veterans General Hospital, Taipei, Taiwan.
School of Medicine, National Yang Ming Chiao Tung University, Taipei, Taiwan.
J Med Internet Res. 2021 Mar 17;23(3):e24926. doi: 10.2196/24926.
The pregnancy rate after cancer treatment for female survivors is lower than that of the general population. Future infertility is a significant concern for patients with breast cancer and is associated with a poor quality of life. Reproductive-age patients with breast cancer have safe options when choosing a type of fertility preservation method to be applied. Better information and support resources aimed at women to support their decision making are needed.
The objective of this study was to develop a web-based shared decision-making tool for helping patients with breast cancer make decisions on fertility preservation.
We used the action research cycle of observing, reflecting, planning, and acting to develop a web-based shared decision-making tool. The following four phrases were applied: (1) observe and reflect-collect and analyze the decision-making experiences of patients and health care providers; (2) reflect and plan-apply the initial results to create a paper design and modify the content; (3) plan and act-brainstorm about the web pages and modify the content; (4) act and observe-evaluate the effectiveness and refine the website's shared decision-making tool. Interviews, group meetings, and constant dialogue were conducted between the various participants at each step. Effectiveness was evaluated using the Preparation for Decision-Making scale.
Five major parts were developed with the use of the action research approach. The Introduction (part 1) describes the severity of cancer treatment and infertility. Options (part 2) provides the knowledge of fertility preservation. The shared decision-making tool was designed as a step-by-step process (part 3) that involves the comparison of options, patient values, and preferences; their knowledge regarding infertility and options; and reaching a collective decision. Resources (part 4) provides information on the hospitals that provide such services, and References (part 5) lists all the literature cited in the website. The results show the web-based shared decision-making meets both patients' and health providers' needs and helps reproductive-age patients with breast cancer make decisions about fertility preservation.
We have created the first web-based shared decision-making tool for making fertility preservation decisions in Taiwan. We believe female patients of reproductive age will find the tool useful and its use will become widespread, which should increase patient autonomy and improve communication about fertility preservation with clinicians.
Clinicaltrials.gov NCT04602910; https://clinicaltrials.gov/ct2/show/NCT04602910.
癌症治疗后女性幸存者的妊娠率低于一般人群。未来不孕是乳腺癌患者的一个重要关注点，并与生活质量差有关。有生育能力的乳腺癌患者在选择应用一种生育力保存方法时有安全的选择。需要更好的针对女性的信息和支持资源，以支持她们的决策。
本研究旨在开发一种基于网络的共同决策工具，帮助乳腺癌患者做出生育力保存决策。
我们使用观察、反思、计划和行动的行动研究周期来开发基于网络的共同决策工具。应用了以下四个短语：（1）观察和反思-收集和分析患者和医疗保健提供者的决策经验；（2）反思和计划-应用初始结果创建纸质设计并修改内容；（3）计划和行动-集思广益网页并修改内容；（4）行动和观察-评估有效性并完善网站的共同决策工具。在每个步骤中，各种参与者之间都进行了访谈、小组会议和持续对话。使用决策准备量表评估有效性。
使用行动研究方法开发了五个主要部分。引言（第 1 部分）描述了癌症治疗和不孕的严重性。选项（第 2 部分）提供了生育力保存的知识。共同决策工具被设计为一个逐步的过程（第 3 部分），涉及对选项、患者价值观和偏好的比较；他们对不孕和选择的了解；以及达成集体决策。资源（第 4 部分）提供了提供此类服务的医院信息，参考文献（第 5 部分）列出了网站中引用的所有文献。结果表明，基于网络的共同决策满足了患者和医疗保健提供者的需求，并帮助有生育能力的乳腺癌患者做出了生育力保存决策。
我们在台湾创建了第一个用于做出生育力保存决策的基于网络的共同决策工具。我们相信，有生育能力的育龄女性会发现该工具很有用，并且其使用会变得广泛，这应该会增加患者的自主权，并改善与临床医生关于生育力保存的沟通。
Clinicaltrials.gov NCT04602910；https://clinicaltrials.gov/ct2/show/NCT04602910。
