Article(id=1322168713739096714, tenantId=1146029695717560320, journalId=1220038315760373764, issueId=1322168329855418548, articleNumber=null, orderNo=null, doi=10.12102/j.issn.1009-6493.2026.07.022, pmid=null, cstr=null, oa=null, hot=null, price=null, onlineType=0, articleFormat=0, articleType=null, articleTypeStr=null, receivedDate=1748793600000, receivedDateStr=2025-06-02, revisedDate=1772467200000, revisedDateStr=2026-03-03, acceptedDate=null, acceptedDateStr=null, onlineDate=1793159186062, onlineDateStr=2026-10-28, pubDate=1775750400000, pubDateStr=2026-04-10, doiRegisterDate=null, doiRegisterDateStr=null, onlineIssueDate=1793159186062, onlineIssueDateStr=2026-10-28, onlineJustAcceptDate=null, onlineJustAcceptDateStr=null, onlineFirstDate=null, onlineFirstDateStr=null, sourceXml=null, magXml=null, createTime=1793159186062, creator=13701087609, updateTime=1793159186062, updator=13701087609, issue=Issue{id=1322168329855418548, tenantId=1146029695717560320, journalId=1220038315760373764, year='2026', volume='40', issue='7', pageStart='1057', pageEnd='1240', issueExtLink='null', onlineDate='null', pubDate='1775750400000', pubDateStr='2026-04-10', beforeIssueId=null, nextIssueId=null, price=null, status=1, issueComplete=1, articleOrder=1, issueType=-1, specialIssue=null, createTime=1793159094536, creator='13701087609', updateTime=1793159094536, updator='13701087609', preIssue=null, nextIssue=null, articleTotal=null, ext=null, issueFiles=null, downloadFileDto=null}, startPage=1220, endPage=1225, ext={EN=ArticleExt(id=1322168713927840395, articleId=1322168713739096714, tenantId=1146029695717560320, journalId=1220038315760373764, language=EN, title=Application progress on web-based decision support aids in advance care planning, columnId=1220689485315101342, journalTitle=Chinese Nursing Research, columnName=Review Articles, runingTitle=null, highlight=null, articleAbstract=

This study reviewed the design mode,design characteristics and feasibility evaluation of the web-based advance care planning decision support aids,discussed its potential value in clinical practice and public health,and put forward the shortcomings and suggestions of such tools,so as to provide reference for the construction of a website-based advance care planning decision-making aids.

, authors=Yuhong LUO1, 2, Juan SHI2, Limin CUI2, Shanshan CHENG3, authorsList=Yuhong LUO, Juan SHI, Limin CUI, Shanshan CHENG, authorCompany=null, correspAuthors=Limin CUI, authorNote=null, correspAuthorsNote=
CUI Limin, E-mail:
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对网站式预立医疗照护计划决策辅助工具的设计模式、设计特征、可行性评价进行综述,探讨其在临床实践与公众健康中的潜在价值,提出此类工具存在的不足和建议,为构建网站式预立医疗照护计划决策辅助工具提供参考。

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罗玉红,硕士研究生在读

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崔立敏,E-mail:
CUI Limin, E-mail:
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网站式决策辅助工具在预立医疗照护计划中的应用进展
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罗玉红 1, 2 , 石娟 2 , 崔立敏 2, *, * , 程珊珊 3
护理研究 | 科研综述 2026,40(7): 1220-1225
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护理研究 |科研综述 2026 , 40 (7) : 1220 -1225
网站式决策辅助工具在预立医疗照护计划中的应用进展
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罗玉红,硕士研究生在读

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罗玉红1, 2, 石娟2, 崔立敏2, *, * , 程珊珊3
作者信息
  • 1山东第一医科大学护理学院,山东 250117
  • 2滨州市人民医院
  • 3滨州市妇幼保健院(滨州市儿童医院)
通讯作者:
崔立敏,E-mail:
CUI Limin, E-mail:
作者简介:

罗玉红,硕士研究生在读

Application progress on web-based decision support aids in advance care planning
Yuhong LUO1, 2, Juan SHI2, Limin CUI2 , Shanshan CHENG3
Affiliations
  • 1School of Nursing, Shandong First Medical University, Shandong 250117 China
  • 2Binzhou People's Hospital
  • 3Binzhou Maternal and Child Health Care Hospital(Binzhou Children's Hospital)
  • Corresponding Author:
    CUI Limin, E-mail:
出版时间: 2026-04-10 doi: 10.12102/j.issn.1009-6493.2026.07.022
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对网站式预立医疗照护计划决策辅助工具的设计模式、设计特征、可行性评价进行综述,探讨其在临床实践与公众健康中的潜在价值,提出此类工具存在的不足和建议,为构建网站式预立医疗照护计划决策辅助工具提供参考。

决策辅助工具  /  预立医疗照护计划  /  网络  /  网站  /  综述

This study reviewed the design mode,design characteristics and feasibility evaluation of the web-based advance care planning decision support aids,discussed its potential value in clinical practice and public health,and put forward the shortcomings and suggestions of such tools,so as to provide reference for the construction of a website-based advance care planning decision-making aids.

decision support aids  /  advance care planning  /  network  /  website  /  review
罗玉红, 石娟, 崔立敏, 程珊珊. 网站式决策辅助工具在预立医疗照护计划中的应用进展. 护理研究, 2026 , 40 (7) : 1220 -1225 . DOI: 10.12102/j.issn.1009-6493.2026.07.022
Yuhong LUO, Juan SHI, Limin CUI, Shanshan CHENG. Application progress on web-based decision support aids in advance care planning[J]. Chinese Nursing Research, 2026 , 40 (7) : 1220 -1225 . DOI: 10.12102/j.issn.1009-6493.2026.07.022
以循证医学为基础的共享决策(shared decision making,SDM)是医患双方在信息共享的基础上共同权衡医疗方案的利弊,赋权病人进行自主选择,做出符合病人价值观和偏好的医疗决策方式[1]。这一决策模式实现以人为本,将病人置于决策的核心地位,共享决策的应用场景不仅可以用于当下的治疗选择,还可用于考虑未来的医疗规划中[2]。然而,共享决策的有效实施依赖医患双方对信息的充分理解与价值观的深度沟通,这对临床实践提出了更高要求。预立医疗照护计划(advance care planning,ACP)作为共享决策在终末期医疗场景中的延伸[2],旨在帮助病人在具备决策能力时可明确未来的医疗意愿,与医护人员及家属共同制定符合其价值观的医疗护理方案[3-4]。目前,我国预立医疗照护计划尚处于起步阶段,临床推广面临着病人信息不对称、文化差异等多重挑战[5]。传统预立医疗照护计划的实施中主要依赖医患双方线下沟通对话,存在信息更新滞后、互动性不足等局限,病人的医疗偏好可能随着病情进展而改变,但传统方式缺乏动态记录与调整。而数字健康技术的突破为预立医疗照护计划带来创新解决方案[6]。目前,国外已开发各类预立医疗照护计划决策辅助工具[7],通过提供结构化方法告知病人有关护理选项的信息[8]。网站式决策辅助工具因交互性、动态性和个性化的特点[9],赋予人们资源自主权[10],方便用户依据自身医疗偏好随时进行修改、内容易被理解而受众广泛。其个性化设置和实时反馈功能提高了预先护理计划的参与度和沟通的有效性[8],为预立医疗照护计划实践提供了技术赋能的新路径。我国预立医疗照护计划的发展较为缓慢,网站式决策辅助工具尚未在我国广泛实施。因此,本研究系统综述网站式预立医疗照护计划决策辅助工具的设计模式、设计特征、可行性评价、应用效果及不足,探讨其在临床实践与公众健康中的潜在价值,为构建网站式预立医疗照护计划决策辅助工具提供参考。
预立医疗照护计划的基本目标包括尊重病人的自主权、提高护理质量、加强护患关系、为临终做好准备以及减少过度治疗[11]。预立医疗照护计划是以病人为中心,自愿和持续的过程,支持病人理解和分享他们的个人价值观、生活目标以及对未来医疗护理的偏好[12]。由于预立医疗照护计划在改善预后方面的关键作用,病人临床决策的表达尤为重要。临床指南建议病人参与筛查、治疗和其他干预措施的决策,以帮助医护人员做出符合病人价值观的选择[13],病人决策辅助工具(patient decision aid,PDA)旨在此过程中为病人提供支持。病人决策辅助工具作为病人与医生之间互动的补充,虽然不能取代医患之间的对话,但可以为病人提供决策方案信息,帮助病人澄清价值观,做出高质量决策[14]。网站式预立医疗照护计划决策辅助工具以明确用户个人价值观、目标和偏好为主要目的,具有交互性、动态性和个性化特征,用户需遵循预定的路径或步骤完成预立医疗照护计划过程[15],克服传统纸质版工具的局限性。不同于科学研究和实践指南,该类辅助工具以病人为中心解决医疗决策的不确定性,降低沟通风险,逐步阐明参与者价值观。一般包括提供量身定制的教育、价值观澄清练习、沟通偏好指导及文档记录等模块,以受众目标预立医疗照护计划需求驱动网站开发,既保障病人自主决策,又促进医患信息共享,实现从“被动接受医疗指令”向“主动参与医疗规划”的范式转变。
以有效的理论指导制定切实可行的研究方案在推行预立医疗照护计划过程中尤为重要[16],网站式预立医疗照护计划决策辅助工具的开发多基于相关概念模型和理论框架。
行为改变理论旨在帮助干预设计者从行为入手,分析问题,设计干预措施。该理论假设个人在行动前会经历一系列步骤,包括预先思考、思考、准备、行动和维持5个阶段,由于预立医疗照护计划是一个动态和迭代的过程,人们参与预立医疗照护计划时会在不同时间经历不同行为改变阶段,美国Sudore等[17]开发的Prepare for Your Care(PREPARE)使用视频故事、预先护理计划行为建模等5个步骤[18],以适应时间的变化和行为改变而提供不同的内容。
多属性效用理论是一种量化决策分析理论,对评价指标进行赋权,通过公式计算进行排名,系统地权衡多种决策目标。多属性效用理论考虑决策的个体属性,权衡每个属性的相对重要性,并将个人的不同价值观和愿望综合成单一的选择,以优化他们的偏好,适合用于提前护理计划。Green等[19]基于多属性效应理论开发Making Your Wishes Known(MYWK)网站,以帮助个人反思决策,优先考虑用户的价值观,并制订符合用户意愿的合理计划。
共享思维框架指出,个人倾向在亲人的反馈支持下做出重大决定,如医疗方面的决定,重要的健康决策往往是在与家人、朋友和医疗保健提供者的沟通交流中做出的。因此,Walsh等[20]基于此框架创建Planning Advance Care Together(PACT)网站,该网站不只面向病人,还指导亲人融入预立医疗照护计划决策过程,特别是促进在复杂临床情况下对病人偏好的探索、澄清和共同构建。
COM-B模型是行为改变轮理论的内层核心模型,围绕能力、机会、动机三大核心要素阐述行为改变的发生机制和影响因素,大部分病人因缺乏表达临终医疗意愿的能力和机会,影响病人参与预立医疗照护计划讨论。Malhotra等[21]基于COM-B模型开发了包含病人和护理人员两大模块的My Voice网站,以期待用户重新审视预立医疗照护计划对话,采取并坚持相关健康行为。因此,在设计预立医疗照护计划决策辅助网站时,可以参考已有的网站开发经验,以理论框架为依据,实现以病人为中心,系统梳理预立医疗照护计划信息及未来医疗护理的价值观与目标,推动反思、沟通与记录等决策行为。
《关于促进“互联网+医疗健康”发展的意见》中强调实现医疗健康信息互通共享。在“互联网+”与医疗健康深度融合的背景下[6,22],网络正以其信息可视化优势促进医疗服务的发展[23]。在预立医疗照护计划领域,基于动态交互网站的决策辅助平台正在突破传统医疗决策工具的局限[24],为医患共创医疗决策提供了创新解决途径。决策辅助工具可促进跨平台与提供者之间进行清晰文档记录,以及帮助病人做出决策见解[8]。PREPARE[17]、MYWK[25]等网站以视频、图片及文字等可视化形式呈现,配有情景模拟功能展示临终治疗选项[26],提供清晰的路线图,将复杂的医疗信息转化为直观、易理解的表达方式,帮助用户快速掌握决策关键点。在最后整合部分,用户可以审查和修改之前的各种选择。Walsh等[20]为整合病人预立医疗照护计划社会背景开发的PACT交互式网站,用户可以通过其共享功能选择自己的亲属团队,使家属参与预立医疗照护计划决策中共同标记关注点。同时,对于用户生成的预立医疗照护计划文档,其家属和医疗人员都可看到病人预立医疗照护计划决策的迭代过程。此外,PREPARE、MYWK、PACT等[17,19,24,26-27]网站可将记录的预立医疗照护计划决策打印成文档,以文字形式直观展示。研究显示,专为心力衰竭及其护理者研发的My Voice网站,可通过定期更新健康状态数据,动态调整价值观澄清内容,帮助病人随病情变化重新评估治疗目标[21]。网站式决策辅助工具以用户友好的界面和结构化引导,将信息以可视化形式呈现,帮助病人及其家属在复杂医疗决策中建立清晰的认知框架,从而提升生命末期医疗决策的质量与人文关怀水平,推进医患共同决策。
网站式预立医疗照护计划决策辅助工具一般可概括为基础知识、价值观澄清练习和决策工具[19],通过评估病人对生命质量、家庭负担等因素的重视程度,利用智能化的设计将病人的生命价值观转化为可操作、可追溯的决策依据,生成个性化决策建议。许多网站包含视频,提供量身定制的信息,可以在没有帮助的情况下使用。PREPARE采用模块化设计,用户可根据自身需求选择“医疗代理指定”或“治疗偏好”模块,逐步完成价值观澄清[17]。MYWK通过嵌入叙事医学模块,形成涵盖家庭角色、文化信仰、过往医疗经历等多方面的分析框架[19],通过动态的个性化设计帮助用户澄清其核心医疗价值观[28]。这些网站易于使用,对参与者来说并不烦琐[15,29],允许用户基于不同疾病阶段动态调整意愿,体现临床决策个性化,是临床诊疗路径中的关键节点。这种动态更新的智能辅助工具不仅缓解了传统医患沟通中的信息不对称,更通过决策过程的留存,为医疗团队提供持续优化照护方案的数据支持。
网站式预立医疗照护计划决策辅助工具既将病人的价值偏好转化为可执行的医疗指令,又将临床路径的复杂性拆解为可操作的步骤。通过对接电子健康记录(electronic health record,EHR)集成系统支持跨机构共享预立医疗计划[17,19,27],平台可实时调取用户当前疾病情况等关键信息,匹配出与其健康状况契合的临床选项。同时允许医护人员调取病人已完成的预立医疗照护计划报告,克服了医生时间限制和缺乏沟通培训的障碍[29]。该功能实现了与临床科室、安宁疗护团队等多学科数据的即时同步,使病人的生存意愿能够实时反馈至各科室的治疗路径中。另外,部分网站配有外部超链接,以提供额外信息满足用户的信息需求[29]。这种双向整合不仅确保了医疗决策的临床可行性,更帮助病人在理性认知基础上作出符合其价值观的选择,真正实现了“以病人为中心”的精准医疗决策。
预立医疗照护计划的国际指南认识到将文化信仰纳入规划实践的重要性[30],为了满足多元文化和多信仰人群的需求,网站增设了宗教文化信息,帮助不同文化背景的用户克服认知障碍。MYWK为了应对不同群体的需求差异,该工具支持多语言切换和方言表达,设置了宗教观念、家庭角色等非医学因素选项,增强适配性[19]。澳大利亚开发了预立医疗照护计划Talk网站,旨在提供针对不同文化信仰人群的预先护理计划内容,并补充现有资源[30-31]。可以为与来自不同宗教和文化背景的人进行预立医疗照护计划对话的医疗人员提供特定的宗教信息,以便更好地澄清个人价值观。这种适配不仅停留在翻译层面,更通过认知访谈,确保文化隐喻和健康信念的精准传达[30]。
网站式预立医疗照护计划决策辅助工具基于标准化流程构建由互联网平台支持,以网页形式展现的互动式数字化干预模式,通过整合文本、音频及视频,允许用户与网页内容进行双向互动的在线平台[25]。对于需高频互动且个性化适配的预立医疗照护计划,该类型工具使得用户打破时间和空间的限制进行访问和学习[27,29],方便用户随时根据自身健康状况进行修改和更正,促进了预立医疗照护计划流程。Van Der Smissen等[29]一项基于网络的预立医疗照护计划决策辅助工具可行性与有效性的范围综述中,符合纳入标准的27项研究评估了11个网站式预立医疗照护计划决策辅助项目,参与者对此类辅助工具感到满意且易于使用,结果表明,网站式预立医疗照护计划决策辅助工具显著提高了预立医疗照护计划知识,改善了病人与其亲属或医疗保健专业人员之间的沟通,增加了预立医疗照护计划记录,并提高了病人首选的护理与临床医生和医疗保健代表决定之间的一致性。Van Der Smissen等[24]基于Explore Your Preferences for Treatment and Care工具,对147例慢性病病人进行2个月的随机对照试验,调查该工具的可行性、用户满意度和预立医疗照护计划参与度,调查结果显示,干预组对预立医疗照护计划思考、知识均有显著增加,对该工具易用性和信息量感到满意,并有65.3%的参与者表示会向他人推荐。PREPARE研究团队在设计中特别关注了医疗资源不足人群的需求,提供多语言、多文化适配资源[32],例如老年病人和低社会经济地位人群。Lum等[33]对414例癌症病人进行随机对照试验,对照组仅审查易于阅读的预先指令(AD)5~20 min,试验组则在预先指令的基础上使用PREPARE网站,参与者在研究入组后的基线、1周、3个月和6个月完成了82项预立医疗照护计划参与调查,对照组对预立医疗照护计划文档行动得分率为68.9%,而试验组得分率达99.5%,使用PREPARE网站的便捷性和可及性显著提升了预立医疗文档的制定与记录效率。痴呆病人通常以严重的记忆力丧失和决策能力的变化为特征[34]。Behrens等[26]与痴呆症护理专家团队合作基于现有网站式预立医疗照护计划决策辅助工具改编了Our Memory Care Wishes(OMCW),该网站模块设计简化、内容清晰,考虑和适应与记忆、认知状态和思维功能相关的独特需求,使痴呆病人能够参与共享决策过程。对8对夫妇定量和定性的初步研究显示,OMCW网站对预立医疗照护计划和痴呆病人的偏好有用[26]。Green等[35]对200例晚期癌症病人使用MYWK网站决策辅助工具调查其是否会对病人的希望、绝望或焦虑产生不利影响,结果显示,使用在线计划工具参与预立医疗照护计划可以增加知识,且不会减少晚期癌症病人的希望,增加绝望或引发焦虑。同样,Dupont等[15]对预立医疗照护计划公开的、交互式网络决策辅助工具筛选出30个符合标准的工具,其中25个是网站形式,易被大众访问,My Directives、Be My Voice、My Living Will、Speak Up和Thought Your Own Future Health Care等工具不仅支持预立医疗照护计划的普通人群,还为医疗保健专业人员提供有关预立医疗照护计划的信息,这些工具都以预定步骤鼓励所有用户遵循路径完成预立医疗照护计划过程,而这种线性模式不适用于所有用户,例如只想探索可能性而不做医疗决策的人。
综上所述,网站式预立医疗照护计划决策辅助工具种类多样,优化了病人与医护人员之间的沟通流程,通过智能方式重构临终医疗质量提升路径,在临终结局改善等方面展现出积极作用,但同时存在流程化作业弊端。因此,我国可以在现有工具的基础上,依据现有路线图进行改进,结合不同疾病类型特点和人群对预立医疗照护计划的不同需求构建符合我国临床环境的网站式预立医疗照护计划决策辅助工具。
基于网络的预立医疗照护计划决策辅助工具的发展虽为病人提供了便捷的决策支持,但仍面临许多挑战,需从网站设计、法律规范及临床实践层面深入优化。
网站质量参差不齐,不同网站包含的功能不同[15]。大多数网站设计包含预立医疗照护计划的关键要素,但是许多工具没有提供有关其开发过程的信息;在根据质量评估评分工具(QUEST)对网站的评分中,仅有20%的网站得分≥20分,其他工具的质量得分为中低等,发展成熟的网站所包含的内容更为全面,且在不同环境中得到了评估。另外,大部分的网站由美国开发,与我国的文化差异大,不适用于本土化发展[29]。
在我国,预立医疗照护计划的概念和实践还未全面普及,病人和家属对预立医疗照护计划的认知水平较低,态度也不够积极[11,36]。预立医疗照护计划常涉及生命支持等敏感议题[5,37],但现有工具在伦理规范与本土法律适配性上存在缺口。同时,基于网络的预立医疗照护计划决策辅助工具生成文档的安全性仍然未知[29],用户偏好数据的存储与使用若存在隐私漏洞、未采取加密技术或脱离知情同意原则,敏感信息可能被第3方滥用,尤其在认知障碍病人代理决策场景中,伦理争议与法律风险更为突出。
多数网站的调查研究限定于某一时间段且样本量有限[26,38-39],限制了普遍性,且缺乏长期追踪数据,难以验证对临终照护质量的持续影响。此外,随机对照试验中干预形式和结局指标的异质性较高,亟须建立标准化评估体系以提升证据可靠性。
综上所述,国外开发的网站式预立医疗照护计划决策辅助工具与我国文化观念、医疗实践及伦理认知等方面存在差异,限制了其本土化应用潜力。基于PREPARE等的成熟框架,需构建契合我国社会文化特征的决策支持体系。具体而言,可采用通俗语言替代复杂医学术语,同时需结合城乡差异、医疗资源分布不均等现实问题,设计分层信息呈现策略。另外为规避伦理法律风险,应组建跨学科团队[36,40](临床医学、法学、医学伦理及信息技术领域等)推进预立医疗照护计划实施,相关卫生系统审查工具内容与流程的合规性[41]。将预立医疗照护计划工具使用率纳入安宁疗护质量评价指标,并设立专项资金支持医护人员培训,推进网络化预立医疗照护计划决策辅助工具的优化与普及。在开发过程中,通过以用户为中心的设计方法,将病人、非医疗人员和专家观点纳入其中,以其独特的见解优化网站功能和设计。
基于网络的预立医疗照护计划决策辅助工具种类多样,可以降低病人决策不确定性,同时还可以提高医疗人员[42-43]及医学生预立医疗照护计划知识及学习满意度[24,29],但在特征、功能、可读性、内容质量和证据水平方面各不相同[15]。临终医疗决策实现了从“被动接受”到“主动规划”的范式转变,其应用场景也从晚期疾病向健康群体管理延伸,使病人在生命末期有尊严与自主权,同时也为医疗系统提供了降低无效治疗、优化资源分配的新路径。在提升病人决策能力与医疗质量方面展现出显著优势,但其推广需克服技术、文化与制度障碍。作为文化适配载体,通过数字技术的可塑性,在尊重文化多样性的同时推动临终关怀决策的普及,具有广泛的发展前景,后续优化需兼顾技术与人文关怀,在尊重文化差异的基础上构建可持续的决策支持[43]。未来研究应聚焦工具的长效评价,跨学科协作共同推动预立医疗照护计划的智能转型,构建符合本土需求的网站式预立医疗照护计划决策辅助工具。

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doi: 10.12102/j.issn.1009-6493.2026.07.022
  • 接收时间:2025-06-02
  • 首发时间:2026-10-28
  • 出版时间:2026-04-10
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  • 收稿日期:2025-06-02
  • 修回日期:2026-03-03
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    1山东第一医科大学护理学院,山东 250117
    2滨州市人民医院
    3滨州市妇幼保健院(滨州市儿童医院)

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2种不同金属材料的力学参数
科
Family
属数
Number of
genus
种数
Number of
species
占总种数比例
Percentage of
total species (%)
属
Genus
种数
Number of
species
占总种数比例
Percentage of total
species (%)
鹅膏菌科Amanitaceae 2 11 5.26 鹅膏菌属 Amanita 10 4.78
小菇科 Mycenaceae 2 12 5.74 丝盖伞属 Inocybe 5 2.39
多孔菌科 Polyporaceae 8 14 6.70 蜡蘑属 Laccaria 5 2.39
红菇科 Russulaceae 3 23 11.00 小皮伞属 Marasmius 6 2.87
小菇属 Mycena 11 5.26
光柄菇属 Pluteus 5 2.39
红菇属 Russula 17 8.13
栓菌属 Trametes 5 2.39
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