Shinnar Ruth C, Shinnar Shlomo, Hesdorffer Dale C, O'Hara Kathryn, Conklin Terrie, Cornett Karen Mohler, Miazga Diana, Sun Shumei
Neurology and Pediatrics, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY 10467, USA.
Neurology and Pediatrics, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY 10467, USA.
Epilepsy Behav. 2017 Apr;69:95-99. doi: 10.1016/j.yebeh.2017.01.024. Epub 2017 Feb 23.
Febrile status epilepticus is a serious and frightening event in the life of the child and parent. It is regarded as a medical emergency with potential long lasting consequences. The purpose of this study was to look at the immediate and long term effects of such an event on parental stress and parents' perception of their child's physical and psychosocial wellbeing.
From 2003 to 2010, 199 subjects, age 1 month to 5 years, were recruited as part of a prospective, multicenter study (FEBSTAT) of consequences of febrile status epilepticus (FSE). At one month and one year after the episode of FSE, parents were asked to complete the Parenting Stress Index, short form (PSI/SF), the Pediatric Quality of Life Inventory (PedsQL) and the Child Behavior Checklist (CBCL). In addition to PedsQL and CBCL in the FEBSTAT subjects only, a comparison was made between Columbia Study of First Febrile Seizures subjects with a first simple febrile seizure (SFS) and the FEBSTAT group, including 15 subjects with FSE from the Columbia group, in the area of parental stress which was administered at the same time intervals in both studies.
At baseline, the PSI/SF was statistically significantly higher for SFS versus FSE on the parent-child dysfunctional score and the total raw score, however at one year this difference resolved. In the FSE group, significantly higher parental stress over one year was reported in children with abnormal versus normal prior development (p= 0.02). Prior abnormal development was a risk factor at 1 year for lower total PEDSQL (p=0.01) versus prior normal development. Mean scores on the CBCL at baseline and 1 year were within the normal range for both empirically based scales and major risk factors.
Parents of children experiencing a SFS experienced more stress at baseline than those with FSE. Families of children in the FEBSTAT cohort with identified development problems at baseline that continued, or progressed over the one year period, reported decreasing QOL.
热性惊厥持续状态对儿童及其父母来说是一件严重且可怕的事情。它被视为一种具有潜在长期后果的医疗急症。本研究的目的是观察此类事件对父母压力以及父母对其孩子身体和心理社会幸福感认知的近期和长期影响。
从2003年至2010年，招募了199名年龄在1个月至5岁的受试者，作为热性惊厥持续状态（FSE）后果的一项前瞻性多中心研究（FEBSTAT）的一部分。在FSE发作后的1个月和1年，要求父母完成简式养育压力指数（PSI/SF）、儿童生活质量量表（PedsQL）和儿童行为清单（CBCL）。除了FEBSTAT受试者中的PedsQL和CBCL外，还对首次单纯热性惊厥（SFS）的哥伦比亚首次热性惊厥研究受试者与FEBSTAT组（包括来自哥伦比亚组的15名FSE受试者）在父母压力方面进行了比较，这两项研究在相同时间间隔进行。
在基线时，SFS组在亲子功能失调得分和总原始得分上的PSI/SF在统计学上显著高于FSE组，但在1年时这种差异消失。在FSE组中，发育异常的儿童与发育正常儿童相比，报告的父母在1年中的压力显著更高（p = 0.02）。与发育正常相比，既往发育异常是1年时总PEDSQL较低的一个危险因素（p = ）。基于经验的量表和主要危险因素在基线和1年时CBCL的平均得分均在正常范围内。
经历SFS的儿童的父母在基线时比患有FSE的儿童的父母经历更多压力。FEBSTAT队列中基线时存在已确定的发育问题且在1年期间持续或进展的儿童家庭报告生活质量下降。
