Epilepsy is spectrum of disorders in which a person may have seizures (fits) that are unpredictable in frequency. Most seizures are well controlled with medicines and other types of treatments, but epilepsy can cause problems in social, school and work situations, making independent living difficult. People with seizures tend to have physical problems (e.g. fractures, bruising and a slightly increased risk of sudden death) as well as social problems because of the stigma attached to the illness. People with epilepsy and their families may lack social support or experience social isolation, embarrassment, fear and discrimination, and some parents may also feel guilty. Self-management of epilepsy refers to a wide range of health behaviours and activities that a person can learn and adapt to control their seizures and improve their well-being. This approach needs a partnership between the person and the providers of services (e.g. specialist epilepsy outpatient clinics, nurse-based liaison services between family doctors and specialist hospital doctors, specialist epilepsy community teams), as well as targeted services for specific groups (e.g. children, teenagers and families).
We searched scientific databases for studies in children and adolescents with epilepsy that looked at the effects of self-management of epilepsy. The results are current to September 2016. We wanted to look at several outcomes to see how well people and their families generally cope with epilepsy.
This review compared six education- or counselling-based self-management interventions for children with epilepsy. Four interventions were aimed at children and their parents; one was aimed at teenagers and their parents; and one was aimed at children, adolescents and their parents. Each of the interventions appeared to improve some of the outcomes studied, but no intervention improved all of the outcomes that were measured. The studies also had problems with their methods, which makes their results less reliable. While none of the interventions caused any harm, their impact was limited, and we cannot recommend any single intervention as being the best one for children with epilepsy.
Evidence for the best ways to care for children with epilepsy is still unclear.
Quality of the evidence
The quality of the evidence is poor because all of the studies had major problems in how they were run.
While each of the programmes in this review showed some benefit to children with epilepsy, their impacts were extremely variable. No programme showed benefits across the full range of outcomes, and all studies had major methodological problems. At present there is insufficient evidence in favour of any single programme.
In response to criticism that epilepsy care for children has little impact, healthcare professionals and administrators have developed various service models and strategies to address perceived inadequacies.
To assess the effects of any specialised or dedicated intervention for epilepsy versus usual care in children with epilepsy and in their families.
We searched the Cochrane Epilepsy Group Specialized Register (27 September 2016), the Cochrane Central Register of Controlled Trials (CENTRAL; 2016, Issue 9) in the Cochrane Library, MEDLINE (1946 to 27 September 2016), Embase (1974 to 27 September 2016), PsycINFO (1887 to 27 September 2016) and CINAHL Plus (1937 to 27 September 2016). In addition, we also searched clinical trials registries for ongoing or recently completed trials, contacted experts in the field to seek information on unpublished and ongoing studies, checked the websites of epilepsy organisations and checked the reference lists of included studies.
We included randomised controlled trials (RCTs), cohort studies or other prospective studies with a (matched or unmatched) control group (controlled before-and-after studies), or time series studies.
We used standard methodological procedures expected by Cochrane.
Our review included six interventions reported through seven studies (of which five studies were designed as RCTs). They reported on different education and counselling programmes for children and parents; teenagers and parents; or children, adolescents and their parents. Each programme showed some benefits for the well-being of children with epilepsy, but all had methodological flaws (e.g. in one of the studies designed as an RCT, randomisation failed), no single programme was independently evaluated with different study samples and no interventions were sufficiently homogeneous enough to be included in a meta-analysis,.