title: Caring for children and adolescents with epilepsy: creating an innovative electronic educational resource.
abstract: The majority of children and adolescents with epilepsy are managed in the community setting by general paediatricians. However, there is a paucity of practical, relevant information and standardised management documents assisting paediatricians. In the era of sub-specialisation, an electronic educational resource developed by specialists in epilepsy and paediatrics enhances the interface between tertiary and secondary/primary care. We aimed to create a website (www.pennsw.com.au) designed to optimise the care of all children and adolescents living with epilepsy and to assess its clinical usefulness. The site provides clinicians and families an aligned resource, including key information on epilepsy syndromes, medication usage and adverse effects, safety (sleep deprivation, water sports), driving, pregnancy, psychosocial impact of epilepsy and coping skills. General paediatricians and carers completed a questionnaire, utilising rating scales and open ended questions, to evaluate design, content and clinical usefulness. Forty-nine general paediatricians with a median 12 years of paediatric practice participated. Thirty-two carers participated. Epilepsy syndrome was focal in 59% of the children and generalised in 41%. The majority of participants (paediatricians: 84-100%, families: 69-100%) rated the website as well designed, practical, informative and clinically useful. General paediatricians considered the "Medication" pages and "Epilepsy Management Documents" as practically useful. Carers recorded the "Family Resources", seizure recording documents, the support information on mental health, and the "Coping with Epilepsy" segment as most informative. General paediatricians and carers highly valued the website, reflected by 120,000 page views in 12 months since its launch.
authors.affiliation: Department of Neurology, Level 4 Emergency Wing, Sydney Children's Hospitals Network - Randwick Campus, High Street, Randwick, NSW 2031, Australia; School of Women's and Children's Health, University of New South Wales, Sydney Children's Hospitals Network - Randwick Campus, Randwick, NSW, Australia.
authors.forename: Anne M
authors.initials: AM
authors.lastname: Connolly
authors.affiliation: Department of Neurology, Level 4 Emergency Wing, Sydney Children's Hospitals Network - Randwick Campus, High Street, Randwick, NSW 2031, Australia.
authors.forename: Rob
authors.initials: R
authors.lastname: Slade
authors.affiliation: Department of Neurology, Level 4 Emergency Wing, Sydney Children's Hospitals Network - Randwick Campus, High Street, Randwick, NSW 2031, Australia.
authors.forename: Preena
authors.initials: P
authors.lastname: Uppal
authors.affiliation: Department of Neurology, Level 4 Emergency Wing, Sydney Children's Hospitals Network - Randwick Campus, High Street, Randwick, NSW 2031, Australia; School of Women's and Children's Health, University of New South Wales, Sydney Children's Hospitals Network - Randwick Campus, Randwick, NSW, Australia. Electronic address: annie.bye@health.nsw.gov.au.
authors.forename: Ann M E
authors.initials: AM
authors.lastname: Bye
mesh_terms: D000293:Adolescent; D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D004827:Epilepsy / Q000628:therapy*; D005260:Female; D058005:General Practitioners; D006801:Humans; D007223:Infant; D020407:Internet; D008297:Male; D010372:Pediatrics / Q000193:education*; D011795:Surveys and Questionnaires
keywords: Epilepsy; Epilepsy management; General paediatrician; Medical website; Paediatric epilepsy