Article(id=1240375115997827451, tenantId=1146029695717560320, journalId=1227665162245664772, issueId=1240375105386238038, articleNumber=null, orderNo=null, doi=10.20043/j.cnki.MPM.202311236, pmid=null, cstr=null, oa=null, hot=null, price=null, onlineType=0, articleFormat=0, articleType=null, articleTypeStr=null, receivedDate=1699718400000, receivedDateStr=2023-11-12, revisedDate=null, revisedDateStr=null, acceptedDate=null, acceptedDateStr=null, onlineDate=1773658072709, onlineDateStr=2026-03-16, pubDate=1711296000000, pubDateStr=2024-03-25, doiRegisterDate=null, doiRegisterDateStr=null, onlineIssueDate=1773658072709, onlineIssueDateStr=2026-03-16, onlineJustAcceptDate=null, onlineJustAcceptDateStr=null, onlineFirstDate=null, onlineFirstDateStr=null, sourceXml=null, magXml=null, createTime=1773658072709, creator=13701087609, updateTime=1773658072709, updator=13701087609, issue=Issue{id=1240375105386238038, tenantId=1146029695717560320, journalId=1227665162245664772, year='2024', volume='51', issue='6', pageStart='961', pageEnd='1152', issueExtLink='null', onlineDate='null', pubDate='null', beforeIssueId=null, nextIssueId=null, price=null, status=1, issueComplete=1, articleOrder=1, issueType=-1, specialIssue=null, createTime=1773658070179, creator=13701087609, updateTime=1773658539618, updator=13701087609, preIssue=null, nextIssue=null, ext={EN=IssueExt(id=1240377074414833974, tenantId=1146029695717560320, journalId=1227665162245664772, issueId=1240375105386238038, language=EN, specialIssueTitle=, coverIllustrator=null, specialIssueEditor=, specialIssueAbout=), CN=IssueExt(id=1240377074414833975, tenantId=1146029695717560320, journalId=1227665162245664772, issueId=1240375105386238038, language=CN, specialIssueTitle=, coverIllustrator=null, specialIssueEditor=, specialIssueAbout=)}, issueFiles=null}, startPage=1032, endPage=1035, ext={EN=ArticleExt(id=1240375116790550962, articleId=1240375115997827451, tenantId=1146029695717560320, journalId=1227665162245664772, language=EN, title=Challenges and prospects of self-management in patients with multiple chronic conditions, columnId=1228016572892119056, journalTitle=Modern Preventive Medicine, columnName=Primary Health Services, runingTitle=null, highlight=null, articleAbstract=

The self-management of patients with multiple chronic conditions has more complex characteristics and needs than those of single chronic diseases and plays a central role in healthy disease regression. This paper focuses on the characteristics, current status, barriers and challenges of self-management in patients with multiple chronic conditions, and suggests that self-management of multiple chronic conditions should be viewed from a dynamic and developmental perspective. When providing self-management support to patients, it should be based on their complex self-management needs, identifying specific barriers to the self-management process, establishing self-management links between multiple chronic conditions, and developing personalised self-management support content and methods based on patients' preferences, goals, and available resources, to improve their self-management abilities and health outcomes.

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多重慢性病患者自我管理相较于单一慢性病而言有着更为复杂的特点和需求,在疾病健康转归方面发挥着核心作用。本文重点分析了多重慢性病患者自我管理的特点、现状、存在的障碍和挑战,提示应以动态、发展的眼光看待多重慢性病患者的自我管理。在给患者提供自我管理支持时,应基于他们复杂的自我管理需求,识别自我管理过程中具体障碍,建立多种慢性病之间自我管理的联系,制定基于患者偏好、目标和可用资源的个性化自我管理支持内容和方法,提高患者的自我管理能力,改善其健康结局。

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马春花,E-mail:
, copyrightStatement=本刊刊出的所有文章不代表中华预防医学会和本刊编委会的观点,除非特别声明。, copyrightOwner=中华预防医学会和四川大学华西公共卫生学院, extLink=null, articleAbsUrl=null, sourceXml=q6HonTsY+odlIKN9nvQ8KA==, magXml=i+cG+PQv9NqVtjitONWBQg==, pdfUrl=null, pdf=Tyq3uhPcRvEczj+jUvH5TA==, pdfFileSize=589747, pdfExtLink=null, richHtmlUrl=null, mobilePdfUrl=null, reviewReport=null, pdfFirstPage=null, abstractGraph=null, abstractGraphContent=null, abstractVideo=null, citation=null, cebUrl=null, magXmlContent=hZwDgfGNN5Z7CrBi8pqo8A==, mapNumber=null, authorCompany=null, fund=null, authors=

刘文慧(1998—),女,硕士在读,研究方向:慢性病管理

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刘文慧(1998—),女,硕士在读,研究方向:慢性病管理

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刘文慧(1998—),女,硕士在读,研究方向:慢性病管理

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多重慢性病患者自我管理的挑战与展望
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刘文慧 , 陈俊杰 , 马春花
现代预防医学 | 基层卫生服务 2024,51(6): 1032-1035
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现代预防医学 | 基层卫生服务 2024, 51(6): 1032-1035
多重慢性病患者自我管理的挑战与展望
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刘文慧, 陈俊杰, 马春花
作者信息
  • 广州医科大学护理学院,广东 广州 510000
  • 刘文慧(1998—),女,硕士在读,研究方向:慢性病管理

通讯作者:

马春花,E-mail:
Challenges and prospects of self-management in patients with multiple chronic conditions
Wen-hui LIU, Jun-jie CHEN, Chun-hua MA
Affiliations
  • School of Nursing,Guangzhou Medical University,Guangzhou, Guangdong 510000,China
出版时间: 2024-03-25 doi: 10.20043/j.cnki.MPM.202311236
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多重慢性病患者自我管理相较于单一慢性病而言有着更为复杂的特点和需求,在疾病健康转归方面发挥着核心作用。本文重点分析了多重慢性病患者自我管理的特点、现状、存在的障碍和挑战,提示应以动态、发展的眼光看待多重慢性病患者的自我管理。在给患者提供自我管理支持时,应基于他们复杂的自我管理需求,识别自我管理过程中具体障碍,建立多种慢性病之间自我管理的联系,制定基于患者偏好、目标和可用资源的个性化自我管理支持内容和方法,提高患者的自我管理能力,改善其健康结局。

多重慢性病  /  自我管理  /  自我管理支持  /  障碍  /  挑战

The self-management of patients with multiple chronic conditions has more complex characteristics and needs than those of single chronic diseases and plays a central role in healthy disease regression. This paper focuses on the characteristics, current status, barriers and challenges of self-management in patients with multiple chronic conditions, and suggests that self-management of multiple chronic conditions should be viewed from a dynamic and developmental perspective. When providing self-management support to patients, it should be based on their complex self-management needs, identifying specific barriers to the self-management process, establishing self-management links between multiple chronic conditions, and developing personalised self-management support content and methods based on patients' preferences, goals, and available resources, to improve their self-management abilities and health outcomes.

Multiple chronic conditions (MCC)  /  Self-management  /  Self-management support  /  Barriers  /  Challenges
刘文慧, 陈俊杰, 马春花. 多重慢性病患者自我管理的挑战与展望. 现代预防医学, 2024 , 51 (6) : 1032 -1035 . DOI: 10.20043/j.cnki.MPM.202311236
Wen-hui LIU, Jun-jie CHEN, Chun-hua MA. Challenges and prospects of self-management in patients with multiple chronic conditions[J]. Modern Preventive Medicine, 2024 , 51 (6) : 1032 -1035 . DOI: 10.20043/j.cnki.MPM.202311236
多重慢性病(Multiple chronic conditions,MCC)亦称为慢性病共病,指两种或两种以上慢性病同时发生[1]。随着医疗技术发展和人类预期寿命延长,慢性病发病率在逐年上升的同时MCC的发病率也在不断上升,约一半的慢性病患者患有多种慢性病[2]。研究显示MCC患者有着更差的健康状况、功能状态和生活质量,同时伴随着治疗负担和非计划入院风险的增加,以及过早死亡,同时在现有的医疗系统下,随着每个患者叠加的慢性病数量的增加,医疗保健的负担和挑战也在增加[3]。因此,有效的自我管理对于多重慢性病患者是必要的。研究表明自我管理有助于MCC患者保持最佳健康状态、延缓疾病发展和获得更好的生活质量[4]。目前关于慢性病自我管理,研究主要集中于特定单一的慢性病,本文将视角聚焦于MCC,旨在明确MCC患者自我管理特点、现状、障碍和挑战,以期为我国MCC患者开展自我管理干预提供参考依据。
在单一慢性病背景下,自我管理被描述为个人的能力或实现最佳健康状态所需的一系列行为。一项经典的定性研究描述了慢性病患者的三个自我管理任务包括医疗管理、角色管理和情绪管理[5]。大部分疾病以这三项任务为核心,以问题为导向产生具体的系列行为改变来解释某一种疾病自我管理。然而这些系列的行为改变是基于只关注一种特定的疾病,是标准且可行的,很少或没有考虑到多重慢性病之间如何相互影响,或由于合并了另一种慢性病,基于特定疾病自我管理方案可能无法遵循。例如,参加心脏康复的患者可能因为膝盖或臀部的骨关节炎而很难进行锻炼。
其次,慢性病自我管理三项任务要求患者具备有五种核心自我管理技能[5]:解决问题、决策、资源利用、形成病人/保健提供者的伙伴关系以及采取行动。其中,帮助患者建立疾病信息以促进其做出适当的决策是自我管理教育的核心,具备充分和适当的信息是决策的基础[6]。MCC患者由于自我管理任务繁杂,决策的基础不仅包括帮助患者形成关于疾病的关键信息,如运动量、血糖控制指标等,还需要将复杂变化的慢性病管理需求与其家庭、社会和个人需求相结合,同时考虑他们的个体价值观、目标和偏好,帮助其做出切实可行、最合适的自我管理决定,以减轻患者的治疗负担[7]
慢性病自我管理基于自我效能和行为医学理论,其目标是通过自我管理改变个体行为、健康状况和卫生保健利用[8]。这些目标是客观的,且呈现一定的递进关系。而MCC自我管理,侧重于实现患者的生活和健康目标,更加强调个性化和动态调整[9]。例如,一名患有糖尿病、心力衰竭和肾功能衰竭的患者,在接受血液透析的那一天,可能需要优先密切监测血糖和血压水平,并根据需要调整胰岛素或药物的剂量,而不是进行体育锻炼。
综上所述,相较于单一慢性病,MCC自我管理具有慢性病之间相互影响、患者决策复杂以及更具有个性化、随着时间推移进行反复优先排序、动态调整的特点。
目前尚未有公认的关于MCC自我管理概念和特异性的评估工具,针对现状调查研究,国内学者宋洪娜等[10]基于冠心病自我管理量表测量冠心病合并糖尿病患者的自我管理水平,结果显示,自我管理水平高于单一冠心病患者。赵凌燕等[11]使用慢性病管理自我效能感量表测量慢性阻塞性肺疾病合并肌少症患者的自我管理现状,结果显示患者自我管理能力处于偏低水平。国外研究者采用智能健康管理策略评估工具简表,以多维方式评估MCC患者自我管理能力,结果显示自我管理能力得分随着伴随疾病数量的增加而下降[4]。也有研究基于自我报告的健康行为和药物依从性量表测量不同疾病组合的MCC患者的自我管理水平,显示部分MCC患者在坚持用药和参加医疗保健随访等自我管理活动中的依从性较好[12]。同时为了更全面地了解MCC自我管理,国外学者还通过质性研究挖掘患者内心体验、剖析疾病不同阶段患者自我管理产生的变化,强调将MCC自我管理视为一个反复、动态的过程来看待[13-14]
国内外研究均显示了MCC患者自我管理水平较低,这可能是因为自我管理差的慢性病患者更有可能患有多种慢性病,或者因为MCC患者可能在自我管理方面存在困难。也有部分研究显示MCC患者比单一慢性病患者自我管理水平高,这可能是因为在MCC自我管理过程中,叠加的经验更有助于他们进行自我管理,患者利用过去获得的疾病知识和技能,特别是在病情相互关联并有类似疾病管理策略的情况下,运用这些经验能够更好地管理自己的健康[15]。以上这些研究结果的差异,可能是因为不同的慢性病组合之间的病情差异或者是由于研究者通过使用合并疾病中的某一个疾病的自我管理评估工具或者普适性评估工具来评价MCC自我管理现状,本质上是基于单一慢性病视角,从自我管理涉及的实际行为或先决条件来评估,未考虑MCC自我管理的特点,如未将自我管理视为一个反复、动态过程来评估,导致对MCC自我管理评估不完整,产生了结果的偏移。因此,未来研究可基于单一慢性病自我管理中关于自我管理的行为和先决条件,结合MCC自我管理特点、过程、来定义和评估其自我管理,在此基础上开展现状调查研究以期为制定自我管理干预提供依据。
在MCC背景下,自我管理被认为是一种不断增加的疾病负担。患者面临的自我管理任务之间可能相互重叠、矛盾或者累积,使得自我管理工作量增加。在个人有限时间与精力下,当自我管理任务超负荷或者个人应对能力难以与自我管理平衡时,患者身心功能则会受损,从而损害其自我管理能力。在身体层面,研究表明MCC患者经历了更多的躯体症状[16],如疼痛、疲乏等。这些症状相互叠加累积使患者无法完成涉及生活方式改变的自我管理任务。这些症状之间也可能相互影响,一种疾病症状可能会掩盖或加重另一种疾病症状[17],使得患者对于管理疾病感到困难,降低了自我管理能力。在心理层面,一方面,MCC患者更容易出现抑郁症状,而抑郁是限制他们有效自我管理的主要因素之一[18]。抑郁降低了MCC患者动机、优先级设置技能和解决问题的能力,从而降低了他们自我管理能力。另一方面,MCC患者更容易出现自我效能感差的状况[19]。自我效能是采取自我管理行为的一个重要因素[20],反映了个体有信心完成一项任务或活动的能力。自我效能感低的患者,可能在采取行动改变生活习惯或防止症状加重方面遇到困难而经常去就诊。
认知能力是影响自我管理的重要因素,包括记忆力和解决问题的能力[21]。对于MCC患者而言,由于自我管理任务的叠加和症状相互影响,对认知能力具有更高的要求。由于MCC患者大部分是老年群体[3],使得情况更为复杂。一方面,他们的记忆力开始下降,影响了自我管理任务的执行(如药物管理等)。另一方面,衰老不可避免会产生疲劳和身体的生理功能衰退。老年MCC患者可能对区分“正常”的老年生理性症状和MCC症状感到困难[22],导致其无法对更严重的潜在症状识别并做出积极反应。例如,患有糖尿病和心力衰竭的老年患者因体液量增加而感到疲劳,但患者却把疲劳归因于他们所患的糖尿病,认为可能是糖尿病饥饿引起的低血糖,并吃了几块咸饼干,却加重了心力衰竭的症状。
在自我管理支持中,由于精细化、专科化的医疗体系,缺乏协调、连续的护理计划[23],医务人员在给MCC患者提供自我管理教育时,基于了专科疾病的指南和计划,这使得MCC患者接收了来源于不同专科的自我管理信息和建议,可能会不一致或相互矛盾,从而引发了认知和情绪上的超负荷,损害了MCC患者自我管理能力[24]。另外,当MCC患者合并了新的疾病时,意味着新的自我管理任务的增加。但如果自我管理的任务是在患者现有管理框架内进行的,则容易被MCC患者接受[25]。对于许多慢性病,自我管理任务之间存在潜在的协同作用[13],即几种疾病都可能从相同的自我管理中受益。如果医务人员在提供MCC自我管理支持时能够认识到这一协同作用,并向患者强调在哪些方面可以与现有的自我管理实践相联系,这样可以加强或促进MCC患者自我管理行为和效果。如患有冠心病和糖尿病的患者,使患者知晓他因糖尿病而习得的自我管理方法可以应用到冠心病,认识到运动不仅对于糖尿病有好处,对心脏也有好处,这将有助于提高患者的自我管理积极性。因此,协调、连续、个性化的自我管理支持以及对不同疾病之间自我管理的联系感知,对MCC患者开展自我管理有积极的影响。
社区主要任务之一是管理MCC患者[26]。研究表明[24]在提供MCC患者自我管理支持中,出院后的院外自我管理支持尤为重要。MCC患者在出院后的自我管理不是一套固定的任务,是随着病情变化而逐渐变化的动态过程[27]。因此,MCC患者出院后的社区自我管理支持既要指导患者进行自我管理活动的协调,也要满足他们逐渐转变的疾病管理相关需求,如重返社会角色的帮助决策等。有证据表明[28]MCC患者在社区接受自我管理支持有限。一方面,MCC患者在社区的家庭医生签约率低[29],存在自我转诊或交叉转诊,医务人员难以提供连续的自我管理支持服务。另一方面,MCC自我管理的复杂性要求医务人员具备充分的专业知识、以病人为中心的理念和跨专业合作,才可能对MCC患者提出专业化的自我管理建议[9]。此外,MCC患者在社会经济贫困地区更为常见,但贫困可能成为他们参与自我管理实践的障碍[30]。研究表明生活在高度贫困社区的MCC患者在自我管理方面的期望值较低,且获得自我管理支持和教育的机会较少。开展自我管理能力,需要个人和社会资源支持,包括家庭收入、医疗保险等[31]
基于MCC自我管理复杂性、研究现状以及患者在个体、医疗层面面临的障碍和挑战,本文从研究和实践角度提出建设性建议,为改善MCC患者自我管理提供参考。
目前对MCC患者的关注较少,尚未有公认的MCC自我管理概念和定义。因此,研究者可通过文献综述、概念分析和现象学描述等方法对MCC概念及其内涵界定并开发特异性MCC患者自我管理工具,才能准确评估其自我管理现状。针对自我管理的复杂性和持续性,可以将其视为一个动态的过程,从障碍、挑战、体验、自我管理设置优先级、自我管理偏好等视角开展质性和纵向研究进行深入阐释分析。
目前慢性病患者自我管理的焦点主要集中在特定疾病的自我管理技能和实践,缺乏针对合并几种慢性病的MCC患者自我管理支持体系。因此,医务人员在给他们建立自我管理支持体系时,避免只针对目前所就诊科室的专科自我管理建议,而应该整体考虑患者目前所患的疾病类型,整合不同疾病的自我管理教育信息,同时识别在这个过程中患者可能面临的自我管理冲突,帮助患者理解其可能面临的复杂问题,以提供循证、协调、综合的自我管理支持。同时应考虑患者个体可能面临的身心障碍, 充分评估其身体症状、情绪状态、自我效能和认知能力,并给予积极干预措施,提高患者自我管理能力和积极性。
在MCC自我管理过程中,叠加的经验更有助于患者进行自我管理。MCC患者可以利用过去获得的知识和个人经验,在各种情况下运用这些知识和经验来更好地管理自己的健康。因此,医护人员应建立疾病之间自我管理的联系,并向患者强调在哪些方面可以与现有的自我管理实践相联系,强化患者自我管理知识和技能的协同和迁移作用。这样可以促进患者自我管理技能的提升,也可以使患者意识到自我管理行为的益处,从而促进他们积极开展自我管理。
社区是MCC患者获得自我管理支持的重要场所,应尽可能为他们提供全面、可及的医疗服务。在医疗保健系统中,分配更多的资源到社区、扩大医疗保险范围,使MCC患者能够更好地获得初级医疗卫生服务。对于经济不发达地区,做好医疗资源分配以及咨询和转诊系统的完善,可通过远程医疗服务帮助贫困地区MCC患者获得医疗卫生服务,提高他们的自我管理能力。将MCC患者视为一个整体,针对患者不断变化、更新的自我管理需求提供全面、个性化的医疗服务。加强全科医生和家庭医生在MCC自我管理概念、认知和干预方面的培训,提高护理连续性,使他们能够对MCC患者提供全面、整体、动态的自我管理支持。
  • 广州医科大学科研能力提升项目(广医发[2023]16号)
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2024年第51卷第6期
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doi: 10.20043/j.cnki.MPM.202311236
  • 接收时间:2023-11-12
  • 首发时间:2026-03-16
  • 出版时间:2024-03-25
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  • 收稿日期:2023-11-12
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广州医科大学科研能力提升项目(广医发[2023]16号)
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    广州医科大学护理学院,广东 广州 510000

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