ICU危重症患者肾脏替代治疗家属代理决策辅助工具的研制：以用户为中心的快速原型

doi:10.24920/004326

摘要/Abstract

摘要： 目的肾脏替代治疗（RRT）在危重症患者并发急性肾损伤的应用日益增加,但治疗的最佳时机尚不明确,患者预后的不确定性问题突出,造成医疗决策的复杂情境、患者治疗的伦理冲突和决策困境等现状。本研究旨在为危重症患者的家属替代决策者开发一种决策辅助工具（DA）,以支持家属参与ICU医患共同决策。
方法基于以用户为中心设计的系统化流程来开发这项决策辅助工具：（i）竞争性分析：对当前应用市场和学术领域中与主题相关的现存DA进行检索,并对获取资源进行全面的分析评估,以探索DA的研制策略、开发技术、功能需求等方面的要素;（ii）用户需求评估：采用半结构性访谈,探索目标用户的决策经验,挖掘用户未被满足的决策需求,进而明确用户的核心需求;（iii）证据综合：基于循证医学研究方法,将最新临床证据和决策信息整合形成DA的主要内容。
结果本研究检索纳入了16个与主题相关的DA进行竞争性分析,并从可获取资源中提取用于开发工具的重要见解。我们对15名替代决策者的决策经历进行访谈,揭示了家属陷入决策困境、决策的不确定感、决策能力不足和决策延迟等四个主题。共纳入27篇文献用于证据综合。从来源于决策支持系统或临床指南的文献中提取关于疾病和治疗的基础知识作为工具的决策背景信息;从纳入文献中筛选凝练出21项证据条目,呈现在RRT决策工具的益处和风险、可能的结果、以及选择理由等板块的内容架构。我们将DA开发为基于Web版本的原型,引导用户通过识别治疗选项、权衡治疗利弊、澄清个人价值观与偏好、制定医患共同决策的实施计划这四个序贯性步骤来完成决策应用。
结论本研究设计开发了一个用于ICU危重症患者肾脏替代治疗家属代理决策辅助工具的快速原型,未来将进一步评估该工具在临床决策场景中的可用性、可行性和干预效果。

关键词: 决策辅助工具, 肾脏替代治疗, 重症监护病房, 医患共同决策, 以用户为中心的设计, 代理人

Abstract: Objectives Renal replacement therapy (RRT) is increasingly adopted for critically ill patients diagnosed with acute kidney injury, but the optimal time for initiation remains unclear and prognosis is uncertain, leading to medical complexity, ethical conflicts, and decision dilemmas in intensive care unit (ICU) settings. This study aimed to develop a decision aid (DA) for family surrogate of critically ill patients to support their engagement in shared decision-making process with clinicians.
Methods Development of DA employed a systematic process with user-centered design (UCD) principle, which included: (i) competitive analysis: searched, screened, and assessed the existing DAs to gather insights for design strategies, developmental techniques, and functionalities; (ii) user needs assessment: interviewed family surrogates to explore target user group's decision-making experience and identify their unmet needs; (iii) evidence syntheses: integrate latest clinical evidence and pertinent information to inform the content development of DA.
Results The competitive analysis included 16 relevant DAs, from which we derived valuable insights from existing resources. User decision needs were explored among a cohort of 15 family surrogates, revealing four thematic issues in decision-making, including stuck into dilemmas, sense of uncertainty, limited capacity, and delayed decision confirmation. A total of 27 articles were included for evidence syntheses. Relevant decision-making knowledge on disease and treatment, as delineated in the literature sourced from decision support system or clinical guidelines, were formatted as the foundational knowledge base. Twenty-one items of evidence were extracted and integrated into the content panels of benefits and risks of RRT, possible outcomes, and reasons to choose. The DA was drafted into a web-based phototype using the elements of UCD. This platform could guide users make preparation of decision-making through a sequential four-step progress: identifying treatment options, weighing the benefits and risks, clarifying personal preferences and values, and formulating a schedule for formal shared decision-making with clinicians.
Conclusions We developed a rapid prototype of DA tailored for family surrogate decision makers of critically ill patients in need of RRT in ICU setting. Future studies are needed to evaluate its usability, feasibility, and clinical effects of this intervene.

Key words: decision aids, renal replacement therapy, intensive care units, shared decision making, user-centered design, surrogate

Miao Zheng, Yonghui Zhang, Ying Cao, Changlin Yin, Lihua Wang. Development of a Decision Aid for Family Surrogate Decision Makers of Critically Ill Patients Requiring Renal Replacement Therapy in ICU: User-Centered Design for Rapid Prototyping[J/OL].Chinese Medical Sciences Journal, .DOI:10.24920/004326.[Epub ahead of print].

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