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首页> 外文期刊>Patient Preference and Adherence >The impact of quality of life on treatment preferences in multiple sclerosis patients
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The impact of quality of life on treatment preferences in multiple sclerosis patients

机译：生活质量对多发性硬化症患者治疗偏好的影响

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Introduction: Multiple sclerosis (MS) is a demyelinating disorder with an unpredictable and often disabling course. MS symptoms are very heterogeneous and may lead to reduced physical, cognitive, and psychosocial functioning decreasing patients’ quality of life (QoL). Today, various disease-modifying treatments (DMTs) may prevent disease progression. However, it is increasingly complex to select the right therapy for a given patient and patient preferences should be considered when making treatment decisions. This study aimed to explore the main factors affecting patients’ preferences regarding MS treatment and health care. Methods: Five qualitative focus group interviews were carried out with a total of 40 participants from across Denmark. A semistructured question guide included questions that were identified in a systematic literature study about QoL and treatment preferences in patients with MS. The participants were asked to describe their disease experiences, their health-related QoL, and reasons behind their preferences with regard to treatment and care. The data were analyzed using content analysis and a constructivist approach. Results: The participants’ physical, cognitive, and psychosocial QoL and functioning were reduced by disease symptoms, treatment side effects, and mode of administration. Their ability to uphold meaningful role functioning was crucial to their treatment priorities. The preeminence of anticipated efficacy, ie, the patients’ hope that DMT might prevent disease deterioration in the future, was modified by their present QoL and functioning when ultimately framing their treatment preferences. There was an unmet information and support need from neurology clinics, particularly at the time of diagnosis. Conclusion: The participants’ treatment preferences were influenced by a matrix of treatment and QoL-related factors and evolved with time and along with personal and professional changes in life. The patients preferred to receive a clear recommendation of DMT from the neurologist taking into account their individual functioning and present QoL priorities.
机译：简介：多发性硬化症（MS）是一种脱髓鞘疾病，病程不可预测且经常会致残。 MS症状非常不同，可能导致身体，认知和社会心理功能下降，从而降低患者的生活质量（QoL）。如今，各种疾病缓解疗法（DMT）可能会阻止疾病进展。但是，为给定患者选择正确的治疗方法变得越来越复杂，在制定治疗决策时应考虑患者的喜好。这项研究旨在探讨影响患者对MS治疗和医疗保健偏好的主要因素。方法：对来自丹麦各地的40名参与者进行了5次定性小组访谈。半结构化的问题指南包括在有关MS患者的QoL和治疗偏好的系统文献研究中确定的问题。要求参与者描述他们的疾病经历，与健康相关的QoL以及他们偏爱治疗和护理的背后原因。使用内容分析和建构主义方法分析数据。结果：疾病症状，治疗副作用和给药方式降低了参与者的身体，认知和社会心理生活质量和功能。他们坚持有意义的角色运作的能力对他们的治疗重点至关重要。预期的疗效（即患者希望DMT将来预防疾病恶化）的优越性已被当前的QoL和最终确定治疗偏好的功能所改变。神经病学诊所，尤其是在诊断时，信息和支持需求尚未得到满足。结论：参与者的治疗偏好受到治疗矩阵和生活质量相关因素的影响，并且随着时间的推移以及个人和职业生活的变化而变化。考虑到患者的个体功能并表现出QoL优先考虑，患者倾向于从神经科医生那里获得DMT的明确推荐。

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