在肌萎缩侧索硬化症多学科护理中，是什么影响了患者的决策？一项关于患者观点的研究。
What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives.
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, New South Wales, Australia.
出版信息
Patient Prefer Adherence. 2012;6:829-38. doi: 10.2147/PPA.S37851. Epub 2012 Nov 27.
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.
背景
肌萎缩侧索硬化症（ALS）患者在病程中需要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。然而，我们缺乏患者对此问题的看法。本研究旨在探索ALS患者的经历，并确定影响他们在ALS专科多学科护理中决策的因素。
方法
进行了一项探索性研究。来自两个ALS专科多学科诊所的14名患者参与了半结构化访谈，访谈进行了录音和转录。对数据进行分析以找出新出现的主题。
结果
决策受到三个层面因素的影响，即结构因素、互动因素和个人因素。结构因素是ALS专科多学科诊所的决策环境，它通过为患者提供疾病特异性信息和专科护理计划来支持决策。互动因素是患者的ALS经历，包括患者对诊断的反应、对病情恶化的应对以及与ALS多学科团队的互动。个人因素是患者的个人理念，包括他们的人生观、控制感认知和对未来的规划。患者的决策方式反映出对当下的关注，而非对疾病未来进展和潜在护理需求的预期。
结论
当患者的个人理念得到患者与ALS多学科团队之间合作关系的支持时，ALS护理中症状管理和生活质量的决策会得到加强。患者重视多学科团队提供的支持；然而，他们对当下生活的关注与健康专业人员为患者及其护理者为未来做准备的努力有所不同。健康专业人员面临的挑战是如何最好地让每位患者参与针对其未来需求的决策，以弥合这一差距。
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