title: Parental stress, pediatric quality of life, and behavior at baseline and one-year follow-up: Results from the FEBSTAT study.
abstract: 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.
authors.affiliation: Neurology and Pediatrics, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY 10467, USA. Electronic address: codell@sprynet.com.
authors.forename: Ruth C
authors.initials: RC
authors.lastname: Shinnar
authors.affiliation: Neurology and Pediatrics, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY 10467, USA.
authors.forename: Shlomo
authors.initials: S
authors.lastname: Shinnar
authors.affiliation: GH Sergievsky Center, and Department of Epidemiology, Columbia University, New York, NY 10032, USA.
authors.forename: Dale C
authors.initials: DC
authors.lastname: Hesdorffer
authors.affiliation: Pediatric Neurology, Virginia Commonwealth University, Richmond, VA 23298, USA.
authors.forename: Kathryn
authors.initials: K
authors.lastname: O'Hara
authors.affiliation: Neurology, Children's Hospital of The King's Daughter, Norfolk, VA 23507, USA.
authors.forename: Terrie
authors.initials: T
authors.lastname: Conklin
authors.affiliation: Duke University Medical Center, Durham, NC 27710, USA.
authors.forename: Karen Mohler
authors.initials: KM
authors.lastname: Cornett
authors.affiliation: Neurology, Lurie Children's Hospital, Chicago, IL 60611, USA.
authors.forename: Diana
authors.initials: D
authors.lastname: Miazga
authors.affiliation: Department of Biostatistics, Virginia Commonwealth University, Richmond, VA 23298, USA.
authors.forename: Shumei
authors.initials: S
authors.lastname: Sun
mesh_terms: D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D002658:Developmental Disabilities / Q000175:diagnosis / Q000523:psychology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D008297:Male; D016487:Parenting / Q000523:psychology; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D012307:Risk Factors; D003294:Seizures, Febrile / Q000175:diagnosis / Q000523:psychology*; D013226:Status Epilepticus / Q000175:diagnosis / Q000523:psychology*; D013315:Stress, Psychological / Q000175:diagnosis / Q000523:psychology*
keywords: Behavior; Febrile status epilepticus; Parental stress; Pediatric quality of life