Care delivery and self management strategies for children with epilepsy

Nigel Fleeman, Peter M Bradley, Bruce Lindsay

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. 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. 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 In addition, we contacted experts in the field to seek information on unpublished and ongoing studies, checked the websites of epilepsy organisations and checked the reference lists of included studies. 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. Each review author independently selected studies, extracted data and assessed the quality of included studies. 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. 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.