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首页> 外文期刊>Patient Preference and Adherence >What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives
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What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

机译：什么影响肌萎缩侧索硬化多学科护理中的患者决策？对患者观点的研究

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Background: Patients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients’ ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS.Methods: An exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes.Results: Decision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients’ reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients’ personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs.Conclusion: Decision-making for symptom management and quality of life in ALS care is enhanced when the patient’s personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.
机译：背景：患有肌萎缩性侧索硬化症（ALS）的患者必须在疾病过程中就生活质量和症状管理做出决策。临床医生认为，患者及时做出决策的能力极具挑战性。但是，我们对此问题缺乏耐心的看法。这项研究旨在探讨ALS患者的经历，并找出影响其在ALS专业多学科护理中决策的因素。方法：进行了探索性研究。来自两家专业ALS多学科诊所的14名患者参加了有记录和转录的半结构式访谈。结果：决策受到三个层次因素的影响，即结构性，互动性和个人性。结构因素是专门的多学科ALS诊所的决策环境，该环境通过为患者提供特定疾病的信息和专门的护理计划来支持决策。交互因素是ALS患者的经历，包括患者对诊断的反应，对恶化的反应以及与多学科ALS团队的接触。个人因素是患者的个人哲学，包括他们对生活的看法，对控制的看法以及对未来的计划。患者的决策方法反映了对当前状况的关注，而不是预期疾病的未来进展和潜在的护理需求。结论：支持患者的个人理念后，可以改善ALS护理中症状管理和生活质量的决策通过患者与多学科ALS团队之间的协作关系。患者重视多学科团队提供的支持;然而，他们对当前生活的关注与卫生专业人员为患者及其护理者为未来做好准备的努力背道而驰。卫生专业人员面临的挑战是如何最好地让每个患者参与其未来需求的决策，以弥合这一差距。

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