开发一种用于指导肌萎缩侧索硬化多学科护理决策的模型。
Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care.
作者信息
Hogden Anne, Greenfield David, Nugus Peter, Kiernan Matthew C
机构信息
Centre for Clinical Governance Research, Australian Institute of Health Innovation, University of New South Wales Sydney, Sydney, NSW, Australia.
Centre for Medical Education and Department of Family Medicine, McGill University, Montreal, QC, Canada.
出版信息
Health Expect. 2015 Oct;18(5):1769-82. doi: 10.1111/hex.12169. Epub 2013 Dec 23.
BACKGROUND
Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .
OBJECTIVE
The aim was to examine the question: how can decision making that is both effective and patient-centred be enacted in ALS multidisciplinary care?
SETTING AND PARTICIPANTS
Fifty-four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi-structured interviews. Interviews were transcribed, coded and analysed thematically.
RESULTS
Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision-making process; patient-centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non-specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: 'Participant Engagement'; 'Option Information'; 'Option Deliberation'; and 'Decision Implementation'.
DISCUSSION
Effective and patient-centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient-centred decision making, by incorporating patients' cyclic decision-making patterns and facilitating carer inclusion in decision processes.
CONCLUSIONS
The model captures the complexities of patient-centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.
背景
肌萎缩侧索硬化症（ALS）患者在症状管理和生活质量方面面临众多决策。慢性病和癌症护理中的决策模型不足以满足ALS患者复杂多变的需求。
目的
旨在探讨以下问题：如何在ALS多学科护理中实施既有效又以患者为中心的决策？
地点和参与者
来自两家专门的ALS多学科诊所的54名受访者（32名医疗专业人员、14名患者和8名护理人员）参与了半结构化访谈。访谈内容被转录、编码并进行主题分析。
结果
利益相关者观点的比较揭示了ALS决策的六个关键主题。这些主题是决策过程；以患者为中心；时机和规划；信息来源；与专门的ALS服务机构的接触；以及获得非专门服务。由此得出一个嵌入专门的ALS多学科诊所的模型，以指导患者决策。该模型是循环的，有四个阶段：“参与者参与”；“选项信息”；“选项审议”；以及“决策实施”。
讨论
专门的ALS诊所的结构增强了有效且以患者为中心的决策，该结构促进了患者的症状管理和生活质量目标。然而，ALS的动态性质以及患者和家属的痛苦对患者和护理人员参与ALS决策构成了考验。我们的模型通过纳入患者的循环决策模式并促进护理人员参与决策过程，优化了以患者为中心的决策。
结论
该模型体现了ALS中以患者为中心的决策的复杂性。该框架可以在这种具有挑战性的疾病环境中帮助患者和护理人员、医疗专业人员、研究人员和政策制定者。
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