Abstract：
BACKGROUND: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: PwSPMS experience a negative impact on their HRQoL, with a high physical impact, fatigue, cognitive impairment, and a high burden of indirect costs.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: PwSPMS experience a negative impact on their HRQoL, with a high physical impact, fatigue, cognitive impairment, and a high burden of indirect costs.
摘要：
背景：继发性进展型多发性硬化症（pwSPMS）患者的残疾增加，这会对他们的健康相关生活质量(HRQoL)产生负面影响。我们的目的是评估继发性进行性多发性硬化症（SPMS）对功能状态和HRQoL的影响，并描述该人群的临床状况。
方法：发现是一种观察，横截面,西班牙真实世界临床实践中回顾性数据收集的多中心研究。社会人口统计学和临床变量，功能和认知量表，患者报告结果（PRO），和直接医疗保健，并收集了非医疗保健和间接成本。
结果：共有297名可评估的pwSPMS参与，EDSS评分在3-6.5之间：62.3％为女性，18.9％的SPMS活跃。在学习访问中，其中77％的患者的扩展残疾量表评分（EDSS）为6-6.5。近40％的人没有接受任何疾病改善治疗。关于工作情况,61.6％的人因残疾而不活跃。专业人士：99.3%的人在EuroQoL-5维度-5级别显示流动性受损，约60%报告了多发性硬化症影响量表-29的身体影响。疲劳占76.1%，近40%的人报告焦虑或抑郁。符号数字模式测试用于评估认知障碍；80％的患者低于平均得分。两年前复发且EDSS评分较高的参与者对HRQoL的影响更大。对HRQoL有负面影响的PwSPMS带来了更高的成本负担，主要是间接成本。
结论：PwSPMS对其HRQoL有负面影响，有很高的物理影响，疲劳,认知障碍，以及间接成本的高负担。
方法：发现是一种观察，横截面,西班牙真实世界临床实践中回顾性数据收集的多中心研究。社会人口统计学和临床变量，功能和认知量表，患者报告结果（PRO），和直接医疗保健，并收集了非医疗保健和间接成本。
结果：共有297名可评估的pwSPMS参与，EDSS评分在3-6.5之间：62.3％为女性，18.9％的SPMS活跃。在学习访问中，其中77％的患者的扩展残疾量表评分（EDSS）为6-6.5。近40％的人没有接受任何疾病改善治疗。关于工作情况,61.6％的人因残疾而不活跃。专业人士：99.3%的人在EuroQoL-5维度-5级别显示流动性受损，约60%报告了多发性硬化症影响量表-29的身体影响。疲劳占76.1%，近40%的人报告焦虑或抑郁。符号数字模式测试用于评估认知障碍；80％的患者低于平均得分。两年前复发且EDSS评分较高的参与者对HRQoL的影响更大。对HRQoL有负面影响的PwSPMS带来了更高的成本负担，主要是间接成本。
结论：PwSPMS对其HRQoL有负面影响，有很高的物理影响，疲劳,认知障碍，以及间接成本的高负担。
