Division of Child Neurology, Department of Neurology, Medical College of Wisconsin, Children's Wisconsin, Milwaukee, WI, USA.
Division of Critical Care, Department of Pediatrics, Medical College of Wisconsin, Children's Wisconsin, Milwaukee, WI, USA.
Epilepsia Open. 2021 Sep;6(3):539-547. doi: 10.1002/epi4.12513. Epub 2021 Jun 21.
To investigate parental perception of FIRES outcomes, assess emotional states and related social media usage.
A survey-based study of parents of children with FIRES participating in a FIRES-specific Facebook group was performed. The survey collected information on medical aspects of their child's course in the acute, subacute, and chronic periods, emotional states, and social media usage. Child outcome was assessed utilizing the pediatric extended Glasgow outcome scale (GOS-E). Parental emotional states were assessed utilizing the Depression, Anxiety and Stress Scale (DASS). Descriptive statistics were performed. Associations were described using the Spearman rank correlation. Open-ended questions were included. Thematic analysis was performed.
Twenty-nine surveys were analyzed. All children were in the chronic phase at time of survey response, except for two who died. Mothers answered 22 surveys, and fathers answered seven. Median age at FIRES presentation was 5.6 years [IQR 4.2-8.95], with a median number of 3 seizures per week [IQR 0-10, range 0-50], 4 daily anti-seizure medicines [IQR 3-5], and chronic GOS-E of 6 [IQR 2-8 range 2-8]. Most parents reported none to mild levels of depression, anxiety, and stress. Higher seizure burden positively correlated with parental depression symptoms (r = .41 (95% CI 0.01, 0.70), P = .045). Most parents found social media helpful with coping and 96% desired FIRES research advertised. Twenty-five parents shared their recommendations to fellow parents and the medical team in an open-ended format. Themes included support, expertise, and medical advice.
Despite their children's significantly impaired functional outcome after FIRES and high rates of medically refractory epilepsy, the cohort demonstrated remarkable emotional resilience. They perceive social media as beneficial, are interested in social media-advertised research, and share valuable advice. Social media may serve as an introductory platform to enhance the physician-scientist-parent/patient relationship.
调查父母对 FIRES 结局的看法，评估其情绪状态并分析相关社交媒体的使用情况。
采用问卷调查的方式，对参与特定于 FIRES 的 Facebook 群组的 FIRES 患儿父母进行研究。该调查收集了患儿在急性期、亚急性期和慢性期的医疗状况、情绪状态和社交媒体使用情况等信息。利用儿童扩展格拉斯哥结局量表（GOS-E）评估患儿结局。采用抑郁、焦虑和压力量表（DASS）评估父母的情绪状态。采用描述性统计进行分析。采用 Spearman 秩相关描述相关性。纳入开放性问题，进行主题分析。
共分析了 29 份调查问卷。除 2 名死亡患儿外，所有患儿均处于调查时的慢性期。22 份问卷由母亲回答，7 份由父亲回答。FIRES 发作时的中位年龄为 5.6 岁[四分位距（IQR）4.2-8.95]，中位每周发作次数为 3 次[IQR 0-10，范围 0-50]，每日抗癫痫药物中位数为 4 种[IQR 3-5]，慢性 GOS-E 评分为 6[IQR 2-8，范围 2-8]。大多数父母报告抑郁、焦虑和压力处于轻度至无水平。更高的癫痫发作负担与父母的抑郁症状呈正相关（r=0.41（95%CI 0.01，0.70），P=0.045）。大多数父母认为社交媒体有助于应对疾病，96%的父母希望在社交媒体上宣传 FIRES 研究。25 位父母以开放式格式分享了他们对其他父母和医疗团队的建议。主题包括支持、专业知识和医疗建议。
尽管患儿 FIRES 后的功能结局明显受损，且癫痫发作药物难治性高，但该队列表现出了显著的情绪弹性。他们认为社交媒体有益，对社交媒体宣传的研究感兴趣，并分享了有价值的建议。社交媒体可以作为一个介绍性平台，以增强医生-科学家-家长/患者的关系。
