Hoffmann Olaf, Paul Friedemann, Haase Rocco, Kern Raimar, Ziemssen Tjalf
Department of Neurology, Alexianer St. Josefs-Krankenhaus Potsdam, Potsdam, Germany.
Medizinische Hochschule Brandenburg Theodor Fontane, Neuruppin, Germany.
Patient Prefer Adherence. 2024 Feb 22;18:455-466. doi: 10.2147/PPA.S452849. eCollection 2024.
To reduce the risk of long-term disability in people with Multiple Sclerosis (pwMS), an increasing number of disease-modifying immune therapies (DMT) are available, involving diverse mechanisms of action, levels of efficacy, treatment risks, and tolerability aspects. Including patient preferences and expectations in shared decision-making may improve treatment satisfaction, adherence, and persistence.
To investigate long-term alignment of individual preferences and expectations of pwMS with their actual DMT and its effect on treatment satisfaction, health-related quality of life (HRQoL), adherence, and treatment discontinuation.
A total of 401 pwMS beginning a new DMT were enrolled from 2015 to 2018 in a non-interventional study at three German MS centres. Patient preferences regarding DMT, TSQM-9, SF36, and self-reported adherence as well as relapses and EDSS were recorded at baseline and every 3 to 6 months for up to 3 years.
Efficacy and tolerability were the highest-ranking preferences at baseline. Actual selection of DMT corresponded more closely to safety than efficacy, tolerability, or convenience preferences. Participants reported excellent adherence throughout the study. DMT persistence was 69.0%, with earlier discontinuation for injectable vs oral or infusion therapies. Breakthrough disease, rather than patient-reported outcomes, was the main driver of DMT discontinuation. For all routes of administration, global treatment satisfaction increased over time despite lower satisfaction with convenience. Several patterns of changing preferences were observed.
This study provides insight into the interaction of DMT preferences of pwMS with their actual treatment experience. Treatment decisions should be aligned with long-term expectations of pwMS to promote continuous adherence.
为降低多发性硬化症患者（pwMS）出现长期残疾的风险，越来越多的疾病修正免疫疗法（DMT）可供使用，这些疗法涉及不同的作用机制、疗效水平、治疗风险和耐受性方面。在共同决策中纳入患者的偏好和期望可能会提高治疗满意度、依从性和持续性。
调查pwMS患者的个人偏好和期望与其实际使用的DMT的长期一致性，以及这对治疗满意度、健康相关生活质量（HRQoL）、依从性和治疗中断的影响。
2015年至2018年期间，在德国三个多发性硬化症中心进行的一项非干预性研究中，共招募了401名开始使用新DMT的pwMS患者。在基线时以及之后每3至6个月记录一次患者对DMT的偏好、TSQM-9、SF36、自我报告的依从性以及复发情况和扩展残疾状态量表（EDSS），为期长达3年。
在基线时，疗效和耐受性是排名最高的偏好。DMT的实际选择与安全性的对应程度高于疗效、耐受性或便利性偏好。参与者在整个研究过程中报告了极高的依从性。DMT的持续使用率为69.0%，注射疗法比口服或输液疗法更早中断使用。突破性疾病而非患者报告的结果是DMT中断使用的主要驱动因素。对于所有给药途径，尽管对便利性的满意度较低，但总体治疗满意度随时间有所提高。观察到几种偏好变化模式。
本研究深入了解了pwMS患者对DMT的偏好与其实际治疗体验之间的相互作用。治疗决策应与pwMS患者的长期期望保持一致，以促进持续依从性。
