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Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study
Kathy N Speechley1, Mark A Ferro, Carol S Camfield
1Department of Paediatrics, Western University, London, UK. kathy.speechley@lhsc.on.ca
Insights
Health-related quality of life (HRQL) in children with new-onset epilepsy varied significantly. Cognitive problems and family factors were key predictors of poorer HRQL outcomes over two years.
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Epilepsy Management
Background:
- New-onset epilepsy significantly impacts children's lives.
- Understanding health-related quality of life (HRQL) is crucial for effective pediatric epilepsy care.
- Longitudinal data on HRQL trajectories in newly diagnosed epilepsy is limited.
Purpose of the Study:
- To assess health-related quality of life (HRQL) over two years in children aged 4-12 years with new-onset epilepsy.
- To identify baseline risk factors associated with HRQL outcomes at two years post-diagnosis.
- To analyze individual HRQL trajectories in this pediatric population.
Main Methods:
- A multicenter prospective cohort study (HERQULES) involving 283 children.
- Parent-reported HRQL and family factors, alongside neurologist-reported clinical data, collected four times.
- Individual growth curve modeling and multiple regression analyses were used to determine HRQL trajectories and risk factors.
Main Results:
- HRQL scores showed rapid improvement in the first six months, then stabilized.
- Approximately 50% of children experienced meaningful HRQL improvements, while 20% declined.
- Compared to the general population, children with epilepsy scored lower on psychosocial HRQL measures at two years.
- Cognitive problems, poor family functioning, and high family demands predicted poorer HRQL at two years.
Conclusions:
- While average HRQL was relatively good, individual trajectories varied considerably.
- A significant proportion of children did not achieve meaningful HRQL improvements or experienced declines.
- Cognitive problems emerged as the strongest predictor of compromised HRQL, potentially driving declines in newly diagnosed epilepsy cases.
Objectives:
To assess health-related quality of life (HRQL) over 2 years in children 4-12 years old with new-onset epilepsy and risk factors.
Methods:
Data are from a multicenter prospective cohort study, the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Parents reported on children's HRQL and family factors and neurologists on clinical characteristics 4 times. Mean subscale and summary scores were computed for HRQL. Individual growth curve models identified trajectories of change in HRQL scores. Multiple regression identified baseline risk factors for HRQL 2 years later.
Results:
A total of 374 (82) questionnaires were returned postdiagnosis and 283 (62%) of eligible parents completed all 4. Growth rates for HRQL summary scores were most rapid during the first 6 months and then stabilized. About one-half experienced clinically meaningful improvements in HRQL, one-third maintained their same level, and one-fifth declined. Compared with the general population, at 2 years our sample scored significantly lower on one-third of CHQ subscales and the psychosocial summary. After controlling for baseline HRQL, cognitive problems, poor family functioning, and high family demands were risk factors for poor HRQL 2 years later.
Conclusions:
On average, HRQL was relatively good but with highly variable individual trajectories. At least one-half did not experience clinically meaningful improvements or declined over 2 years. Cognitive problems were the strongest risk factor for compromised HRQL 2 years after diagnosis and may be largely responsible for declines in the HRQL of children newly diagnosed with epilepsy.
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