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多发性硬化症治疗中的共同决策:欧美横断面真实世界调查结果

Shared Decision-Making in the Treatment of Multiple Sclerosis: Results of a Cross-Sectional, Real-World Survey in Europe and the United States.

作者信息

Keenan Alexander, Le Hoa H, Gandhi Kavita, Adedokun Lola, Jones Eddie, Unsworth Mia, Pike James, Trenholm Emily

机构信息

Scientific Affairs, Janssen Pharmaceuticals Inc., Titusville, NJ, USA.

Research and Development, Janssen Pharmaceuticals Inc., Titusville, NJ, USA.

出版信息

Patient Prefer Adherence. 2024 Jan 16;18:137-149. doi: 10.2147/PPA.S440410. eCollection 2024.

Abstract

INTRODUCTION

Multiple sclerosis (MS) is a neurodegenerative disease characterized by progressive deterioration of cognitive and physical functioning, reducing activities of daily living and quality of life (QoL). Several treatments are available that modify the course of the disease and reduce the frequency of relapses. Although effective, all treatment options are accompanied by adverse events, and this study aimed to assess the extent to which patients were involved in the choice of treatment.

METHODS

Data were drawn from the Adelphi Multiple Sclerosis Disease Specific Program (DSP)™, a cross-sectional survey of healthcare practitioners (HCP) and their patients with MS in real-world clinical settings in Europe and the United States (US) between December 2020 and July 2021. HCPs reported patient demographics, clinical characteristics, current and previous treatment, and treatment outcomes. Patients voluntarily completed questionnaires reporting the physical and psychological impact of their MS and its treatment. Regression analysis with inverse probability of treatment weighting was used to compare treatment outcomes in patients actively involved in their current treatment choice with those who were not.

RESULTS

Of a total of 692 patients, median age 40 years and 64% female, mostly diagnosed with relapsing-remitting MS, those who were involved in shared decision-making tended to choose oral therapies such as dimethyl fumarate more often than HCPs. MS had greater impact on physical and psychological functioning in patients whose HCP made treatment decisions solely. Patients involved in decision-making reported greater satisfaction with their treatment and a better QoL.

DISCUSSION

Because no single optimal therapy exists for patients with MS, treatments should be individualized with consideration of patients' preferences. Our study shows that shared decision-making is under-utilized in the management of MS and supports the benefits of patient involvement.

CONCLUSION

Patients who have an active role in treatment decision-making show improved wellbeing and QoL, and overall treatment satisfaction.

摘要

引言

多发性硬化症(MS)是一种神经退行性疾病,其特征是认知和身体功能逐渐恶化,日常生活活动及生活质量(QoL)下降。目前有多种治疗方法可改变疾病进程并减少复发频率。尽管这些治疗方法有效,但所有治疗方案都伴有不良事件,本研究旨在评估患者参与治疗选择的程度。

方法

数据来源于阿德尔菲多发性硬化症特定疾病项目(DSP)™,这是一项对欧洲和美国(US)2020年12月至2021年7月期间真实临床环境中的医疗从业者(HCP)及其MS患者进行的横断面调查。HCP报告了患者的人口统计学特征、临床特征、当前和既往治疗情况以及治疗结果。患者自愿完成问卷,报告MS及其治疗对身体和心理的影响。采用治疗权重逆概率回归分析,比较积极参与当前治疗选择的患者与未参与患者的治疗结果。

结果

在总共692名患者中,中位年龄为40岁,女性占64%,大多数被诊断为复发缓解型MS,参与共同决策的患者比HCP更倾向于选择口服疗法,如富马酸二甲酯。在HCP独自做出治疗决策的患者中,MS对身体和心理功能的影响更大。参与决策的患者对治疗的满意度更高,生活质量更好。

讨论

由于MS患者不存在单一的最佳治疗方法,治疗应根据患者的偏好进行个体化。我们的研究表明,共同决策在MS管理中的应用不足,并支持患者参与的益处。

结论

在治疗决策中发挥积极作用的患者,其幸福感、生活质量及总体治疗满意度均有所提高。

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