Department of Obstetrics and Gynecology, Indiana University School of Medicine, 410 W. 10th Street, Indianapolis, IN, 46202, USA.
Patient Engagement Core, Community Health Partnerships, Indiana Clinical and Translational Sciences Institute, Indiana University School of Medicine, 410 W. 10th Street, Indianapolis, IN, 46202, USA.
Patient. 2019 Jun;12(3):327-337. doi: 10.1007/s40271-018-0348-y.
Shared decision-making (SDM) is optimal in the context of periviable delivery, where the decision to pursue life-support measures or palliation is both preference sensitive and value laden. We sought to develop a decision support tool (DST) prototype to facilitate SDM by utilizing a user-centered design research approach.
We convened four patient and provider advisory boards with women and their partners who had experienced a surviving or non-surviving periviable delivery, pregnant women who had not experienced a prior preterm birth, and obstetric providers. Each 2-h session involved design research activities to generate ideas and facilitate sharing of values, goals, and attitudes. Participant feedback shaped the design of three prototypes (a tablet application, family story videos, and a virtual reality experience) to be tested in a final session.
Ninety-five individuals (48 mothers/partners; 47 providers) from two hospitals participated. Most participants agreed that the prototypes should include factual, unbiased outcomes and probabilities. Mothers and support partners also desired comprehensive explanations of delivery and care options, while providers wanted a tool to ease communication, help elicit values, and share patient experiences. Participants ultimately favored the tablet application and suggested that it include family testimonial videos.
Our results suggest that a DST that combines unbiased information and understandable outcomes with family testimonials would be meaningful for periviable SDM. User-centered design was found to be a useful method for creating a DST prototype that may lead to improved effectiveness, usability, uptake, and dissemination in the future, by leveraging the expertise of a wide range of stakeholders.
在极早产儿分娩的情况下，共享决策（SDM）是最佳选择，因为决定是否采取生命支持措施或姑息治疗既取决于偏好，又涉及价值观。我们旨在开发一个决策支持工具（DST）原型，通过采用以用户为中心的设计研究方法来促进 SDM。
我们召集了四个患者和提供者咨询委员会，成员包括经历过幸存或非幸存极早产儿分娩的女性及其伴侣、未经历过先前早产的孕妇以及产科提供者。每次 2 小时的会议都涉及设计研究活动，以产生想法并促进价值观、目标和态度的分享。参与者的反馈塑造了三个原型（平板电脑应用程序、家庭故事视频和虚拟现实体验）的设计，这些原型将在最后一次会议中进行测试。
来自两家医院的 95 人（48 名母亲/伴侣；47 名提供者）参与了研究。大多数参与者一致认为，原型应包括事实、无偏见的结果和概率。母亲和支持伙伴还希望全面解释分娩和护理选择，而提供者则希望有一个工具来缓解沟通，帮助引出价值观，并分享患者的经验。参与者最终倾向于使用平板电脑应用程序，并建议它包含家庭证言视频。
我们的研究结果表明，一个将无偏见的信息和可理解的结果与家庭证言相结合的 DST 对于极早产儿的 SDM 将具有重要意义。用户中心设计被证明是一种有用的方法，可以创建一个 DST 原型，通过利用广泛的利益相关者的专业知识，未来可能会提高其有效性、可用性、采用率和传播率。
