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中度复发缓解型多发性硬化症患者在疾病修饰治疗选择上的决策冲突

Decisional Conflict Regarding Disease-Modifying Treatment Choices Among Patients with Mid-Stage Relapsing-Remitting Multiple Sclerosis.

作者信息

Sabin Julia, Salas Elisa, Martín-Martínez Jesús, Candeliere-Merlicco Antonio, Barrero Hernández Francisco Javier, Alonso Torres Ana María, Sánchez-Menoyo José Luis, Borrega Laura, Rodríguez-Rodríguez María, Gómez-Gutiérrez Montserrat, Eichau Sara, Hernández-Pérez Miguel Ángel, Calles Carmen, Fernandez-Diaz Eva, Carmona Olga, Orviz Aida, López-Real Ana, López-Muñoz Pablo, Mendoza Rodríguez Amelia, Aguera-Morales Eduardo, Maurino Jorge

机构信息

Department of Neurology, Hospital Universitario Puerta de Hierro, Madrid, Spain.

Medical Department, Roche Farma, Madrid, Spain.

出版信息

Patient Prefer Adherence. 2024 Jun 7;18:1163-1171. doi: 10.2147/PPA.S459242. eCollection 2024.

Abstract

PURPOSE

Shared decision-making is critical in multiple sclerosis (MS) due to the uncertainty of the disease trajectory over time and the large number of treatment options with differing efficacy, safety and administration characteristics. The aim of this study was to assess patients' decisional conflict regarding the choice of a disease-modifying therapy and its associated factors in patients with mid-stage relapsing-remitting multiple sclerosis (RRMS).

METHODS

A multicenter, non-interventional study was conducted. Adult patients with a diagnosis of RRMS (2017 revised McDonald criteria) and disease duration of 3 to 8 years were included. The level of uncertainty experienced by a patient when faced with making a treatment choice was assessed using the 4-item Decisional Conflict Scale. A battery of patient-reported and clinician-rated measures was administered to obtain information on symptom severity, illness perception, illness-related uncertainty, regret, MS knowledge, risk taking behavior, preferred role in the decision-making process, cognition, and self-management. Patients were recruited during routine follow-up visits and completed all questionnaires online using electronic tablets at the hospital. A multivariate logistic regression analysis was conducted.

RESULTS

A total of 201 patients were studied. Mean age (Standard deviation) was 38.7 (8.4) years and 74.1% were female. Median disease duration (Interquartile range) was 6.0 (4.0-7.0) years. Median EDSS score was 1.0 (0-2.0). Sixty-seven (33.3%) patients reported a decisional conflict. These patients had lower MS knowledge and more illness uncertainty, anxiety, depressive symptoms, fatigue, subjective symptom severity, a threatening illness perception, and poorer quality of life than their counterparts. Lack of decisional conflict was associated with MS knowledge (Odds ratio [OR]=1.195, 95% CI 1.045, 1.383, p=0.013), self-management (OR=1.049, 95% CI 1.013, 1.093, p=0.018), and regret after a healthcare decision (OR=0.860, 95% CI 0.756, 0.973, p=0.018) in the multivariate analysis.

CONCLUSION

Decisional conflict regarding the selection of a disease-modifying therapy was a common phenomenon in patients with mid-stage RRMS. Identifying factors associated with decisional conflict may be useful to implement preventive strategies that help patients better understand their condition and strengthen their self-management resources.

摘要

目的

由于多发性硬化症(MS)疾病发展轨迹随时间的不确定性以及大量具有不同疗效、安全性和给药特点的治疗选择,共同决策在MS治疗中至关重要。本研究的目的是评估中度复发缓解型多发性硬化症(RRMS)患者在选择疾病修饰治疗方面的决策冲突及其相关因素。

方法

进行了一项多中心、非干预性研究。纳入诊断为RRMS(2017年修订的麦克唐纳标准)且病程为3至8年的成年患者。使用4项决策冲突量表评估患者在面临治疗选择时所经历的不确定程度。采用一系列患者报告和临床医生评定的测量方法,以获取有关症状严重程度、疾病认知、疾病相关不确定性、遗憾、MS知识、冒险行为、在决策过程中偏好的角色、认知和自我管理的信息。患者在常规随访期间招募,并在医院使用电子平板电脑在线完成所有问卷。进行了多变量逻辑回归分析。

结果

共研究了201例患者。平均年龄(标准差)为38.7(8.4)岁,74.1%为女性。中位病程(四分位间距)为6.0(4.0 - 7.0)年。中位扩展残疾状态量表(EDSS)评分为1.0(0 - 2.0)。67例(33.3%)患者报告存在决策冲突。与无决策冲突的患者相比,这些患者的MS知识较少,疾病不确定性、焦虑、抑郁症状、疲劳、主观症状严重程度更高,疾病认知具有威胁性,生活质量更差。在多变量分析中,不存在决策冲突与MS知识(优势比[OR]=1.195,95%置信区间1.045,1.383,p = 0.013)、自我管理(OR = 1.049,95%置信区间1.013,1.093,p = 0.018)以及医疗决策后的遗憾(OR = 0.860,95%置信区间0.756,0.973,p = 0.018)相关。

结论

在中度RRMS患者中,选择疾病修饰治疗的决策冲突是一种常见现象。识别与决策冲突相关的因素可能有助于实施预防策略,帮助患者更好地了解自身病情并增强自我管理能力。

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