Department of Neurology, Hospital Clinico San Carlos, IdISSC, Madrid, Spain; Department of Medicine, Medicine University, Complutense University of Madrid (UCM), Madrid, Spain.
CSUR Multiple Sclerosis and Clinical Neuroimmunology Unit, Neurology Department, Virgen de la Arrixaca Clinical University Hospital, IMIB-Arrixaca, Murcia, Spain.
Mult Scler Relat Disord. 2024 Oct;90:105787. doi: 10.1016/j.msard.2024.105787. Epub 2024 Aug 2.
People with secondary progressive multiple sclerosis (pwSPMS) experience increasing disability, which impacts negatively on their health-related quality of life (HRQoL). Our aims were to assess the impact of secondary progressive multiple sclerosis (SPMS) on functional status and HRQoL and describe the clinical profile in this population.
DISCOVER is an observational, cross-sectional, multicenter study with retrospective data collection in real-world clinical practice in Spain. Sociodemographic and clinical variables, functional and cognitive scales, patient-reported outcomes (PROs), and direct healthcare, and non-healthcare and indirect costs were collected.
A total of 297 evaluable pwSPMS with a EDSS score between 3-6.5 participated: 62.3 % were female and 18.9 % had active SPMS. At the study visit, 77 % of them presented an Expanded Disability Scale Score (EDSS) of 6-6.5. Nearly 40 % did not receive any disease-modifying treatment. Regarding the working situation, 61.6 % were inactive due to disability. PROs: 99.3 % showed mobility impairment in EuroQoL-5 Dimensions-5 Levels, and about 60 % reported physical impact on the Multiple Sclerosis Impact Scale-29. Fatigue was present in 76.1 %, and almost 40 % reported anxiety or depression. The Symbol Digit Modalities Test was used to assess cognitive impairment; 80 % of the patients were below the mean score. Participants who presented relapses two years before and had high EDSS scores had a more negative impact on HRQoL. PwSPMS with a negative impact on HRQoL presented a higher cost burden, primarily due to indirect costs.
PwSPMS experience a negative impact on their HRQoL, with a high physical impact, fatigue, cognitive impairment, and a high burden of indirect costs.
继发进展型多发性硬化症（pwSPMS）患者的残疾程度不断加重，这对其健康相关生活质量（HRQoL）产生了负面影响。我们的目的是评估继发进展型多发性硬化症（SPMS）对功能状态和 HRQoL 的影响，并描述该人群的临床特征。
DISCOVER 是一项观察性、横断面、多中心研究，在西班牙的真实临床实践中进行回顾性数据收集。收集了人口统计学和临床变量、功能和认知量表、患者报告的结果（PRO）以及直接医疗保健、非医疗保健和间接成本。
共有 297 名可评估的 pwSPMS 患者纳入研究，其 EDSS 评分为 3-6.5 分：62.3%为女性，18.9%为活动性 SPMS。在研究就诊时，77%的患者 EDSS 评分为 6-6.5。近 40%的患者未接受任何疾病修正治疗。在工作情况方面，由于残疾，61.6%的患者无法工作。PRO 方面：99.3%的患者在欧洲五维健康量表-5 维度中存在行动障碍，约 60%的患者报告在多发性硬化影响量表-29 中存在身体影响。76.1%的患者存在疲劳，近 40%的患者报告存在焦虑或抑郁。符号数字模态测试用于评估认知障碍；80%的患者的平均得分较低。在研究就诊前两年出现复发且 EDSS 评分较高的患者对 HRQoL 的影响更为负面。对 HRQoL 有负面影响的 pwSPMS 患者的成本负担更高，主要是由于间接成本。
pwSPMS 的 HRQoL 受到负面影响，表现为身体影响较大、疲劳、认知障碍和间接成本负担较高。
