美国多发性硬化症患儿的流行病学和社会困难的影响。

IF 7.7 1区 医学 Q1 CLINICAL NEUROLOGY Neurology Pub Date : 2024-12-10 Epub Date: 2024-11-12 DOI:10.1212/WNL.0000000000209991
Elizabeth Wilson, Huong D Meeks, Bradley J Barney, Michael Waltz, Katia Canenguez, T Charles Casper, John W Rose, Moses Rodriguez, Jan-Mendelt Tillema, Tanuja Chitnis, Mark P Gorman, Mary Rensel, Aaron W Abrams, Lauren B Krupp, Timothy E Lotze, Kristen S Fisher, Nikita Malani Shukla, Teri L Schreiner, Soe S Mar, Emmanuelle Waubant, Akash Virupakshaiah, Yolanda S Wheeler, Jayne M Ness, Leslie A Benson
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引用次数: 0

摘要

背景和目标:健康的社会决定因素(SDOH)会影响患者的健康状况,但对儿科发病型多发性硬化症(POMS)患者的影响尚未进行深入研究。研究目标是:(1) 描述不良 SDOH 的发生频率;(2) 评估社会困难对开始使用疾病改变疗法(DMT)的潜在障碍;(3) 探讨不良 SDOH 与 POMS 疾病预后以及研究自然减员之间的关联:这是一项通过美国儿科多发性硬化症中心网络数据库进行的回顾性多中心观察研究。研究对象为确诊为POMS(不包括原发性进展型多发性硬化症)的患者。主要结果是开始使用DMT的时间。次要结果包括最近的残疾状况扩展量表(EDSS)评分、首次事件的类固醇治疗、第二次事件的发生时间以及研究自然减员。对有困难和无困难(母亲教育程度为高中或以下、公共保险/无保险或单身/无收入家庭)的患者的人口统计学变量和临床结果进行了比较。采用多变量回归模型评估社会困境对研究结果的影响:共有996名参与者(69%为女性,症状出现时的平均年龄和EDSS评分[±SD]分别为14.2±3和1.2±1.1)。在人口统计学信息完整的 768 名患者中,66% 的人报告了生活困难。生活困难与发病和确诊年龄较小有关。虽然开始使用 DMT 的时间没有差异,但有困难的患者更有可能在首次发病时接受类固醇治疗(几率比 [OR] 1.66,95% CI 1.21-2.26,p = 0.002)。没有私人保险与研究中止风险增加(OR 1.85,95% CI 1.14-3.00,p = 0.012)和 EDSS 评分升高(β = 0.15,95% CI 0.01,0.28)有关。生活在无收入家庭(与双职工家庭相比)与较短的第二次发病时间相关(危险比 1.33,95% CI 1.02-1.74,p = 0.034):讨论:艰苦的经历很常见,与较年轻的发病和确诊年龄以及较短的第二次发病时间有关。尽管开始接受 DMT 治疗的时间没有差异,但缺乏私人保险与研究流失和较高的 EDSS 评分有关。与社会困难有关的早期疾病病理生理学可能存在差异,未来的研究需要更好地理解这种复杂的关系。
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Epidemiology and Impact of Social Hardships in Children With Multiple Sclerosis in the United States.

Background and objectives: Social determinants of health (SDOH) affect patient health outcomes, but the impact on patients with pediatric-onset multiple sclerosis (POMS) has not been well studied. Study objectives were to (1) describe the frequency of adverse SDOH, (2) evaluate social hardships as a potential barrier to the initiation of disease-modifying therapy (DMT), and (3) explore the association between adverse SDOH and disease outcomes in POMS, as well as study attrition.

Methods: This was a retrospective multicenter observational study conducted through the United States Network of Pediatric MS Centers database. Participants were patients diagnosed with POMS (excluding primary progressive MS). The primary outcome was time to initiation of DMT. Secondary outcomes included most recent Expanded Disability Status Scale (EDSS) score, steroid treatment for the first event, time to second event, and study attrition. Demographic variables and clinical outcomes were compared between patients with and without hardships (maternal education of high school or less, public insurance/no insurance, or single/no-income household). Multivariable regression models were used to assess the impact of social hardship on study outcomes.

Results: There were 996 total participants (69% female, mean age at symptom onset and EDSS score [±SD] were 14.2 ± 3 and 1.2 ± 1.1, respectively). Of 768 patients with complete demographic information, 66% reported a hardship. Hardship was associated with younger age at symptom onset and diagnosis. While there was no difference in time to DMT initiation, patients with hardship were more likely to receive steroids for the first event (odds ratio [OR] 1.66, 95% CI 1.21-2.26, p = 0.002). Lack of private insurance was associated with increased risk of study attrition (OR 1.85, 95% CI 1.14-3.00, p = 0.012) and higher EDSS score (β = 0.15, 95% CI 0.01, 0.28). Living in a no-income household (vs dual-income) was associated with a shorter time to second event (hazard ratio 1.33, 95% CI 1.02-1.74, p = 0.034).

Discussion: The experience of hardships is common and associated with younger age at symptom onset and diagnosis, as well as shorter time to second event. Lack of private insurance is associated with study attrition and a higher EDSS score despite no difference in time to initiating DMT. There may be differences in early disease pathophysiology related to social hardship, and future studies are needed to better understand this complex relationship.

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来源期刊
Neurology
Neurology 医学-临床神经学
CiteScore
12.20
自引率
4.00%
发文量
1973
审稿时长
2-3 weeks
期刊介绍: Neurology, the official journal of the American Academy of Neurology, aspires to be the premier peer-reviewed journal for clinical neurology research. Its mission is to publish exceptional peer-reviewed original research articles, editorials, and reviews to improve patient care, education, clinical research, and professionalism in neurology. As the leading clinical neurology journal worldwide, Neurology targets physicians specializing in nervous system diseases and conditions. It aims to advance the field by presenting new basic and clinical research that influences neurological practice. The journal is a leading source of cutting-edge, peer-reviewed information for the neurology community worldwide. Editorial content includes Research, Clinical/Scientific Notes, Views, Historical Neurology, NeuroImages, Humanities, Letters, and position papers from the American Academy of Neurology. The online version is considered the definitive version, encompassing all available content. Neurology is indexed in prestigious databases such as MEDLINE/PubMed, Embase, Scopus, Biological Abstracts®, PsycINFO®, Current Contents®, Web of Science®, CrossRef, and Google Scholar.
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