TY - JOUR
T1 - Parental stress, pediatric quality of life, and behavior at baseline and one-year follow-up
T2 - Results from the FEBSTAT study
AU - Shinnar, Ruth C.
AU - Shinnar, Shlomo
AU - Hesdorffer, Dale C.
AU - O'Hara, Kathryn
AU - Conklin, Terrie
AU - Cornett, Karen Mohler
AU - Miazga, Diana
AU - Sun, Shumei
N1 - Funding Information:
This work was supported by the National Institute of Neurological Disorders and Stroke grant NS43209 (PI: S. Shinnar, MD, PhD) and the National Institute of Child Health and Human Development grant HD36867 (PI: D.C. Hesdorffer, PhD).
Publisher Copyright:
© 2017 Elsevier Inc.
PY - 2017/4/1
Y1 - 2017/4/1
N2 - 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. Methods 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. Results 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. Conclusions 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.
AB - 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. Methods 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. Results 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. Conclusions 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.
KW - Behavior
KW - Febrile status epilepticus
KW - Parental stress
KW - Pediatric quality of life
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U2 - 10.1016/j.yebeh.2017.01.024
DO - 10.1016/j.yebeh.2017.01.024
M3 - Article
C2 - 28236729
AN - SCOPUS:85013830695
SN - 1525-5050
VL - 69
SP - 95
EP - 99
JO - Epilepsy and Behavior
JF - Epilepsy and Behavior
ER -