Woodward Jared, Asadi-Pooya Ali A, Mildon Bridget, Tolchin Benjamin
Department of Neurology, Comprehensive Epilepsy Center, Yale University School of Medicine, New Haven, CT, USA.
Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
Epilepsy Behav Rep. 2023 Jun 7;23:100610. doi: 10.1016/j.ebr.2023.100610. eCollection 2023.
Functional seizures (FS) cause significant long-term disability and clinicians offer differing views on proper work restrictions and qualifications for disability benefits in this population. We assess the views and perspectives of experienced disability and work limitations in people living with functional seizures.
Between (4/29/2020-1/13/2021) an open-access 21-item internet survey was conducted via FNDHope.org; allowing for people living with self-reported functional seizures to remark on topics of work difficulties, work restrictions, qualifications for disability benefits, and driving. Demographic information was collected, and univariate and multivariate logistic regressions were used to evaluate potential predictors of current employment status.
One hundred eighteen (118) responses were received, of which 92 (84.4%) completed > 50% of the survey; they were predominantly (92%) female. Most respondents (88%) reported some personal difficulty at work and nearly all (99%) believed that others with FS would experience difficulties in the workplace. A majority (71%) felt that work restrictions should apply to people living with active FS, at least in certain lines of work. Most (64%) felt people with FS should qualify for disability benefits; however, 35% stated work accommodations or a new job compatible with FS was more appropriate. Of those who felt people with FS should qualify for disability, 60% thought recipients should remain eligible for disability while symptomatic and 38% felt benefits should be lifelong. In univariate and multivariate logistic regressions, older age was predictive of unemployment (univariate OR 0.95 ± 0.02, 95% CI 0.92-0.98, p-value 0.002).
Our results suggest that work difficulties are common in people with FS, with older age being a predictor of unemployment. A majority of people with FS support work restrictions for those with their disorder, at least in some lines of work. In comparison to a prior study of clinicians, a higher percentage of people with FS supported work restrictions. These results may help facilitate productive discussions between people with FS, providers, and policymakers regarding appropriate work and disability limitations.
功能性癫痫发作（FS）会导致严重的长期残疾，临床医生对于该人群的合理工作限制及残疾福利资格存在不同观点。我们评估了功能性癫痫发作患者在残疾和工作限制方面的经验、观点和看法。
在2020年4月29日至2021年1月13日期间，通过FNDHope.org进行了一项开放式的21项网络调查；允许自我报告患有功能性癫痫发作的患者就工作困难、工作限制、残疾福利资格和驾驶等话题发表意见。收集了人口统计学信息，并使用单变量和多变量逻辑回归来评估当前就业状况的潜在预测因素。
共收到118份回复，其中92份（84.4%）完成了超过50%的调查；受访者主要为女性（92%）。大多数受访者（88%）报告了工作中的一些个人困难，几乎所有受访者（99%）都认为其他患有FS的人在工作场所会遇到困难。大多数人（71%）认为工作限制应适用于患有活动性FS的人，至少在某些工作领域是这样。大多数人（64%）认为患有FS的人应该有资格获得残疾福利；然而，35%的人表示工作调整或与FS相适应的新工作更为合适。在那些认为患有FS的人应该有资格获得残疾福利的人中，60%的人认为患者在有症状时应继续享有残疾资格，3且8%的人认为福利应该是终身的。在单变量和多变量逻辑回归中，年龄较大是失业的预测因素（单变量OR 0.95±0.02，95% CI 0.92 - 0.98，p值0.002）。
我们的结果表明，工作困难在FS患者中很常见，年龄较大是失业的一个预测因素。大多数FS患者支持对患有该疾病的人实行工作限制，至少在某些工作领域是这样。与之前对临床医生的研究相比，更高比例的FS患者支持工作限制。这些结果可能有助于促进FS患者、医疗服务提供者和政策制定者之间就适当的工作和残疾限制进行富有成效的讨论。
