From the Department of Neurology (E. Wilson), Cincinnati Children's Hospital, OH; Department of Neurology (E. Wilson, M.P.G., L.A.B.), Boston Children's Hospital, MA; Department of Pediatric Neurology (E. Wilson, K.C., T.C.), Massachusetts General Hospital, Boston; Department of Pediatrics (H.D.M., B.J.B., M.W., T.C.C., J.W.R.), University of Utah, Salt Lake City; Department of Neurology (M. Rodriguez, J.-M.T.), Mayo Clinic, Rochester, MN; Department of Neurology (M. Rensel, A.W.A.), Cleveland Clinic, OH; Department of Neurology (L.B.K.), New York University Medical Center, NY; Department of Neurology (T.E.L., K.S.F., N.M.S.), Texas Children's Hospital, Houston; Department of Neurology (T.L.S.), Children's Hospital Colorado, Aurora; Department of Neurology (S.S.M.), Washington University in St. Louis, MO; Department of Neurology (E. Waubant, A.V.), UCSF Weill Institute for Neurosciences, University of California San Francisco; and Department of Neurology (Y.S.W., J.M.N.), University of Alabama at Birmingham.
Neurology. 2024 Dec 10;103(11):e209991. doi: 10.1212/WNL.0000000000209991. Epub 2024 Nov 12.
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.
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.
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, = 0.002). Lack of private insurance was associated with increased risk of study attrition (OR 1.85, 95% CI 1.14-3.00, = 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, = 0.034).
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.
健康的社会决定因素（SDOH）会影响患者的健康结果，但它们对儿科发病多发性硬化症（POMS）患者的影响尚未得到充分研究。研究目的是：（1）描述不利的 SDOH 的发生频率，（2）评估社会困难是否是启动疾病修正治疗（DMT）的潜在障碍，以及（3）探讨 POMS 中不利的 SDOH 与疾病结果之间的关联，以及研究流失。
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性研究。参与者为诊断为儿科发病多发性硬化症（不包括原发性进行性多发性硬化症）的患者。主要结局是开始 DMT 的时间。次要结局包括最近的扩展残疾状况量表（EDSS）评分、首次事件的类固醇治疗、第二次事件的时间和研究流失。在有困难（高中或以下的母亲教育、公共保险/无保险或单人/无收入家庭）和无困难的患者之间比较人口统计学变量和临床结局。使用多变量回归模型评估社会困难对研究结果的影响。
共有 996 名参与者（69%为女性，症状发作和 EDSS 评分的平均年龄[±SD]分别为 14.2±3 和 1.2±1.1）。在 768 名具有完整人口统计学信息的患者中，66%报告存在困难。困难与症状发作和诊断的年龄较小有关。虽然 DMT 开始时间没有差异，但有困难的患者更有可能接受首次事件的类固醇治疗（优势比[OR]1.66，95%置信区间[CI]1.21-2.26， = 0.002）。缺乏私人保险与研究流失的风险增加（OR 1.85，95% CI 1.14-3.00， = 0.012）和 EDSS 评分升高（β=0.15，95% CI 0.01，0.28）相关。无收入家庭（与双收入家庭相比）与第二次事件的时间更短有关（风险比 1.33，95% CI 1.02-1.74， = 0.034）。
困难的经历很常见，与症状发作和诊断的年龄较小有关，也与第二次事件的时间较短有关。尽管 DMT 开始时间没有差异，但缺乏私人保险与研究流失和 EDSS 评分升高有关。与社会困难相关的可能存在疾病早期病理生理学的差异，需要进一步的研究来更好地理解这种复杂的关系。
