Agreement in reporting restrictions in life between children with epilepsy and their parents.

Autor: Bedard C; School of Public Health Sciences, University of Waterloo, Waterloo, Ontario, Canada., Ferro MA; School of Public Health Sciences, University of Waterloo, Waterloo, Ontario, Canada., Whitney R; Department of Pediatrics, Division of Neurology, McMaster University, Hamilton, Ontario, Canada., RamachandranNair R; Department of Pediatrics, Division of Neurology, McMaster University, Hamilton, Ontario, Canada. Electronic address: rnair@mcmaster.ca.
Jazyk: angličtina
Zdroj: Epilepsy & behavior : E&B [Epilepsy Behav] 2023 Nov; Vol. 148, pp. 109461. Date of Electronic Publication: 2023 Oct 16.
DOI: 10.1016/j.yebeh.2023.109461
Abstrakt: Background: This study aimed to determine the parent-child agreement of the Hague Restrictions in Childhood Epilepsy Scale (HARCES) and identify the clinical factors associated with parent-child disagreement and the restrictions.
Methods: Data come from a clinical sample of 90 children ages 9-17 (mean age = 12.9, SD = 6.9, 54% male) attending a pediatric neurology clinic. Parents completed the HARCES, and children completed a modified child-friendly scale (HARCES-M). The parent-child agreement was assessed using intraclass correlation coefficients (ICC) and paired t-tests to compare parent and child responses. Logistic regression examined clinical factors associated with disagreement > 0.5 standard deviation. Associations between clinical factors and restriction scores were examined using linear regression.
Results: Parent-child agreement on the HARCES was poor (ICC = 0.36, 95% CI: 0.03, 0.58), and parents reported fewer restrictions in daily activities (t(89) = 2.45, p = .016) and to attend parties (t(89) = 2.12, p = .038); however, the overall restrictions scores were not different (t(89) = 1.55, p = .125). The presence of convulsive seizures (OR = 0.20, 95% CI: 0.05, 0.75) and longer duration of epilepsy (OR = 1.19, 95% CI: 1.01, 1.41) were associated with parent-child disagreement. No clinical factors were significantly related to either the HARCES or HARCES-M scores.
Conclusions: The disagreement in perceptions of restrictions highlights the need to use child-reported measures along with parental reports to comprehensively understand restrictions on children with epilepsy fully. More research is needed to understand what factors explain parent- and child-rated restrictions due to epilepsy.
Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Rajesh RamachandranNair received research grants from the Ontario Brain Institute, Hamilton Health Sciences Foundation, Department of Pediatrics at McMaster University, and the SUDEP Aware, and served as a paid consultant to UCB Canada Inc. and Sunovion Pharmaceuticals Canada Inc. Dr. Bedard is funded by a CIHR Fellowship, and Dr. Ferro is supported by the Canada Research Chairs Program. The remaining authors have no conflicts of interest.
(Copyright © 2023 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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