Institute of Neuroimmunology and Clinical MS Research, University Medical Center Hamburg, Hamburg, Germany.
J Neurol Sci. 2013 Aug 15;331(1-2):2-9. doi: 10.1016/j.jns.2013.02.018. Epub 2013 May 25.
Patient autonomy has been increasingly acknowledged as prerequisite for successful medical decision making in Western countries. In medical decisions with a need to involve a health professional, patient autonomy becomes apparent in the extent of patients' participation in the communication as described in the concept of shared decision making. Patient autonomy can be derived from different perspectives or goals and the focus of evaluation approaches may vary accordingly. Multiple sclerosis (MS) is a paradigmatic disease to study patient autonomy mainly because MS patients are highly disease competent and due to ambiguous evidence on many aspects of disease-related medical decision making. This review gives an overview on measurement issues in studying decision making in MS, categorized according to prerequisites, process measures and outcomes of patient autonomy. As relevant prerequisites role preferences, risk attribution, risk tolerance, and risk knowledge are discussed. Regarding processes, we distinguish intra-psychic and interpersonal aspects. Intra-psychic processes are elucidated using the theory of planned behavior, which guided development of a 30-item scale to capture decisions about immunotherapy. Moreover, a theory of uncertainty management has been created resulting in the development of a corresponding measurement concept. Interpersonal processes evolving between physician and patient can be thoroughly analyzed from different perspectives by use of the newly developed comprehensive MAPPIN'SDM inventory. Concerning outcomes, besides health related outcomes, we discuss match of preferred roles during the decision encounters (preference match), decisional conflict as well as an application of the multidimensional measure of informed choice to decisions of MS patients. These approaches provide an overview on patient-inherent and interpersonal factors and processes modulating medical decision making and health behavior in MS and beyond.
患者自主性已在西方国家日益得到承认，是成功进行医疗决策的前提。在需要涉及医疗专业人员的医疗决策中，患者自主性体现在共同决策概念中描述的患者参与沟通的程度。患者自主性可以从不同的角度或目标中得出，评估方法的重点也可能因此而有所不同。多发性硬化症 (MS) 是研究患者自主性的典型疾病，主要是因为 MS 患者具有高度的疾病能力，并且在许多与疾病相关的医疗决策方面存在证据不明确的问题。本综述概述了在 MS 中研究决策制定的测量问题，根据前提条件、过程测量和患者自主性的结果进行分类。相关的前提条件包括角色偏好、风险归因、风险容忍度和风险知识。关于过程，我们区分了心理内部和人际方面。使用计划行为理论阐明了心理内部过程，该理论指导了一个 30 项量表的开发，以捕捉关于免疫疗法的决策。此外，还创建了不确定性管理理论，从而开发了相应的测量概念。医患之间的人际过程可以通过使用新开发的综合 MAPPIN'SDM 清单从不同角度进行彻底分析。关于结果，除了健康相关结果外，我们还讨论了决策过程中偏好角色的匹配（偏好匹配）、决策冲突以及多维知情选择量表在 MS 患者决策中的应用。这些方法概述了调节 MS 及其他疾病中医疗决策和健康行为的患者内在和人际因素及过程。
