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Agreement in reporting restrictions in life between children with epilepsy and their parents
Chloe Bedard1, Mark A Ferro1, Robyn Whitney2
1School of Public Health Sciences, University of Waterloo, Waterloo, Ontario, Canada.
Insights
Parent-child agreement on epilepsy restrictions is poor, with parents reporting fewer limitations. Convulsive seizures and longer epilepsy duration increase disagreement, highlighting the need for child-reported measures.
Area of Science:
- Pediatric Neurology
- Child Psychology
- Epilepsy Research
Background:
- Childhood epilepsy significantly impacts daily life and social participation.
- Assessing the impact of epilepsy-related restrictions requires understanding both child and parent perspectives.
Purpose of the Study:
- To evaluate parent-child agreement on epilepsy-related restrictions using the Hague Restrictions in Childhood Epilepsy Scale (HARCES).
- To identify clinical factors associated with parent-child disagreement and restriction levels in children with epilepsy.
Main Methods:
- A clinical sample of 90 children (ages 9-17) and their parents participated.
- Parents completed the HARCES, while children used a modified child-friendly version (HARCES-M).
- Agreement was assessed via intraclass correlation coefficients (ICC) and paired t-tests; logistic and linear regressions analyzed clinical factors.
Main Results:
- Poor parent-child agreement was found on the HARCES (ICC = 0.36).
- Parents reported fewer restrictions on daily activities and social events compared to children.
- Convulsive seizures and longer epilepsy duration were linked to greater parent-child disagreement.
Conclusions:
- Discrepancies in perceived restrictions underscore the necessity of incorporating child-reported data alongside parental reports.
- Further research is required to elucidate factors influencing parent- and child-rated epilepsy restrictions.
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.
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