Service delivery, behavioural, and self-management interventions for children with epilepsy

In the UK, approximately one in 1000 children aged zero to four years have epilepsy, and one in 200 children between the ages of five and 19 have epilepsy. There is a need to focus on models of service delivery and therapies that target cognitive, psychological, and behavioural aspects to improve seizure control and quality of life.

To assess the effects of service delivery, behavioural, and self-management interventions on seizure control and health-related quality of life in children with epilepsy.

We used the Cochrane Register of Studies, MEDLINE, and two other databases, together with reference checking and contact with study authors, to identify the studies included in the review. The latest search date was 21 August 2023.

We included randomised controlled trials (RCTs) or quasi-RCTs of any design (double/single-blinded, unblinded; parallel, cross-over, or cluster). We included behavioural or self-management interventions aimed at improving seizure control in children with epilepsy (average age 18 years or under), and any service delivery interventions targeting children with epilepsy (average age 18 years or under), their parents/carers, or both.

Our primary outcome was seizure control (i.e. change in seizure frequency, seizure freedom). Our secondary outcomes were: seizure severity, overall quality of life and other aspects of quality of life (such as anxiety and depression), medication usage, knowledge, general health, social and psychological function, and adverse events. We classified outcomes as short-term (up to six months) or long-term (over six months). At least two review authors independently screened all papers, extracted data, and assessed the risk of bias. Data analysis was performed by one review author and checked by at least one other review author. We used GRADE to assess the certainty of the evidence for (1) seizure control and (2) participant-reported overall quality of life using validated scales.

We included six studies with a total of 468 randomised participants: four behavioural studies (subcategorised into psycho-behavioural interventions investigated in three studies involving 205 children; and one mind-body intervention with 20 children) and two service delivery studies, involving 243 adult carers of children with epilepsy. Most studies had a high risk of performance bias, detection bias, or both (for lack of or inadequate blinding of participants, personnel, or outcome assessors). The risk of bias was low or unclear across all other domains. Due to the studies' heterogeneity, we were unable to conduct a meta-analysis for any intervention or outcome. We identified no eligible self-management interventions. Psycho-behavioural interventions Compared to usual care, there was a small important effect showing that systemic family therapy may reduce seizure frequency slightly per month at three months (mean difference (MD) in seizure frequency per month -1.98, 95% confidence interval (CI) -3.84 to -0.12; 1 study, 104 participants; low-certainty evidence). Evidence was lacking for differences in seizure frequency between behavioural interventions and control groups in the other two studies (94 participants; results reported descriptively at 10 weeks, three months, and 12 months). Compared to usual care, a manual-based psychosocial group intervention may result in little to no difference in quality of life at three months, but the evidence is very uncertain (Paediatric Quality of Life Inventory: MD -1.40, 95% CI -8.21 to 5.41; 1 study, 76 participants; very low-certainty evidence; Glasgow Epilepsy Outcome Scale for Young Persons: MD -0.33, 95% CI -5.68 to 5.02; P = 0.90; 1 study, 76 participants; very low-certainty evidence). The other two psycho-behavioural studies did not assess overall quality of life. Mind-body interventions It is uncertain whether a mind-body intervention (yoga) made a difference in the number of participants who were seizure-free at three months (seizure freedom MD 1.62, 95% CI 0.97 to 2.69; 1 study, 20 participants; low-certainty evidence). This study did not measure quality of life. Service delivery interventions One service delivery intervention (a clinical pharmacist-led education intervention) assessed seizure control and overall quality of life versus usual care. The evidence is very uncertain whether there were differences in seizure freedom (MD 1.32, 95% CI 0.86 to 2.00; 1 study, 71 participants; very low-certainty evidence) or overall quality of life at two months (MD 10.46, 95% CI 1.82 to 19.10; 1 study, 71 participants; very low-certainty evidence). Quality of life was assessed by adult carers, not the children themselves. The other service delivery intervention ('WeChat'-based remote follow-up after hospital discharge) did not evaluate seizure control and only measured aspects of quality of life (anxiety and depression, 162 participants), rather than overall quality of life. No adverse events were reported in any of the six included studies.

We included six studies in this review, each examining a different intervention, reporting on different outcomes, and involving varied populations. All studies had several limitations, including small sample sizes, lack of blinding, and inconsistent outcome measurement across studies. Overall, the available evidence was of low to very low certainty. Results for long-term (≥ six months) outcomes were very limited for any type of intervention. High-quality RCTs assessing service delivery, behavioural, and self-management interventions in children and adolescents with epilepsy are needed. Trials should assess short-term (≤ six months) and long-term (> six months) outcomes. The development of a core outcome set for children with epilepsy would help ensure trials use relevant, meaningful, and consistent outcomes for evaluating intervention effects.