Care delivery and self management strategies for children with epilepsy
Abstract
Background
Epilepsy care for children has been criticised for its lack of impact. Various service models and strategies have been developed in response to perceived inadequacies in care provision for children and their families.
Objectives
To compare the effectiveness of any specialised or dedicated intervention for the care of children with epilepsy and their families to the effectiveness of usual care.
Search methods
We searched the Cochrane Epilepsy Group Specialized Register (9 December 2013), the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library, 2013,Issue 11), MEDLINE (1946 to June week 2, 2013), EMBASE (1988 to week 25, 2013), PsycINFO (1887 to 11 December 2013) and CINAHL Plus (1937 to 11 December 2013). In addition, we contacted experts in the field to seek information on unpublished and ongoing studies, checked the websites of epilepsy organisations and checked the reference lists of included studies.
Selection criteria
We included randomised controlled trials (RCTs), controlled or matched trials, cohort studies or other prospective studies with a control group (controlled before‐and‐after studies), or time series studies.
Data collection and analysis
Each review author independently selected studies, extracted data and assessed the quality of included studies.
Main results
We included five interventions reported in seven study reports (of which only four studies of three interventions were designed as RCTs) in this review. They reported on different education and counselling programmes for children, 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 each study had methodological flaws (e.g. in one of the studies designed as an RCT, randomisation failed) and no single programme was independently evaluated by more than one study.
Authors' conclusions
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. No study appeared to have demonstrated any detrimental effects but the evidence in favour of any single programme was insufficient to make it possible to recommend one programme rather than another. More studies, carried out by independent research teams, are needed.
PICOs
Plain language summary
Care delivery and self management strategies for children with epilepsy
Background
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, and make independent living difficult. People with seizures tend to have physical problems (e.g. fractures and bruising and rarely an increased risk of sudden death) and problems with how the illness is viewed leading to people with epilepsy being 'labelled'. People with epilepsy and their families may then experience a lack of social support, social isolation, embarrassment, fear and discrimination, and some parents may also feel guilt. 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 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 and volunteers), and targeting of services at specific groups (e.g. children, teenagers and the families).
Study characteristics
We searched scientific databases for clinical trials of children (aged 18 years or under) with epilepsy that looked at the effects of self management of epilepsy. The results are current to December 2013. We wanted to look at several outcomes (e.g. how often seizures occurred, how bad they were, how well the medicines worked, how well the child felt, school/work attendance and cost of care) to see how well or badly people and their families cope with epilepsy.
Key results
This review compared five education‐ or counselling‐based interventions (treatments) for children with epilepsy. One intervention was aimed solely at children, two 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.
