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Epidemiology and Impact of Social Hardships in Children With Multiple Sclerosis in the United States.
Neurology ( IF 7.7 ) Pub 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,

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.

中文翻译:


美国多发性硬化症儿童的流行病学和社会困难的影响。



背景和目标健康的社会决定因素 (SDOH) 会影响患者的健康结果,但对儿科发病的多发性硬化症 (POMS) 患者的影响尚未得到充分研究。研究目标是 (1) 描述不良 SDOH 的频率,(2) 评估社会困难作为开始疾病修饰疗法 (DMT) 的潜在障碍,以及 (3) 探讨不良 SDOH 与 POMS 疾病结果之间的关联,以及研究流失。方法 这是一项通过美国儿科 MS 中心网络数据库进行的回顾性多中心观察研究。参与者是被诊断患有 POMS (不包括原发性进展型 MS) 的患者。主要结局是 DMT 开始的时间。次要结局包括最近的扩展残疾状况量表 (EDSS) 评分、第一次事件的类固醇治疗、第二次事件的时间和研究损耗。比较有困难和无困难 (母亲受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) 之间的人口统计学变量和临床结果。使用多变量回归模型评估社交困难对研究结果的影响。结果共有 996 名参与者 (69% 为女性,症状发作时的平均年龄和 EDSS 评分 [±SD] 分别为 14.2 ± 3 和 1.2 ± 1.1)。在拥有完整人口统计信息的 768 名患者中,66% 的患者报告了困难。困难与症状发作和诊断时的年龄较小有关。虽然 DMT 开始的时间没有差异,但困难患者更有可能在第一次事件中接受类固醇治疗 (比值比 [OR] 1.66,95% CI 1.21-2.26,p = 0.002)。 缺乏私人保险与研究流失风险增加 (OR 1.85, 95% CI 1.14-3.00, p = 0.012) 和较高的 EDSS 评分 (β = 0.15, 95% CI 0.01, 0.28) 相关。生活在无收入家庭 (与双收入相比) 与发生第二次事件的时间较短相关 (风险比 1.33,95% CI 1.02-1.74,p = 0.034)。讨论 困难的经历很常见,并且与症状发作和诊断时的年龄较小以及第二次事件发生的时间较短有关。缺乏私人保险与研究损耗和较高的 EDSS 评分相关,尽管开始 DMT 的时间没有差异。与社会困难相关的早期疾病病理生理学可能存在差异,需要进一步的研究来更好地了解这种复杂的关系。
更新日期:2024-11-12
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