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.
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。