Journal of Clinical Neuroscience xxx (2014) xxx–xxx

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Short Communication

Caring for children and adolescents with epilepsy: Creating an innovative electronic educational resource Anne M. Connolly a,b, Rob Slade a, Preena Uppal a, Ann M.E. Bye a,b,⇑ a b

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

a r t i c l e

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Article history: Received 30 January 2014 Accepted 23 February 2014 Available online xxxx Keywords: Epilepsy Epilepsy management General paediatrician Medical website Paediatric epilepsy

a b s t r a c t 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. Crown Copyright Ó 2014 Published by Elsevier Ltd. All rights reserved.

1. Introduction The majority of children and adolescents with epilepsy are managed by paediatricians in the community setting [1]. Specialised epilepsy knowledge is essential [2]. However, best practice guidelines are not always well established in the non-hospital setting [1,3]. A lack of knowledge about epilepsy contributes to suboptimal care [4]. Provision of practical, relevant information and standardised management documents would assist 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 develop an electronic educational resource (www.pennsw.com.au) utilising this combined expertise and to assess its clinical usefulness. Key information is provided for clinicians and families aligned in one website. Management documents ⇑ Corresponding author. Tel.: +61 2 9382 1536; fax: +61 2 9382 1580. E-mail address: [email protected] (A.M.E. Bye).

are provided to assist in the standardisation of care. The study reports the consumer assessment of useability features and content of the website with an aim to optimise its educational capacity. 2. Materials and methodology 2.1. Resource The website (www.pennsw.com.au) provides the clinician with evidence based guidelines (National Institute for Health and Care Excellence, United Kingdom), International League Against Epilepsy classification of seizures, description of major epilepsy syndromes, a guide to anticonvulsants and adverse effects, management documents (medical record, seizure diary, event description record, drug treatment plan), and emergency seizure and management strategies. Information on lifestyle issues, driving (including a link to Road Transport Authority guidelines), safety (swimming, at risk behaviour, sleep deprivation), pregnancy and contraception, teratogenicity, mental health supports and employment links are

http://dx.doi.org/10.1016/j.jocn.2014.02.019 0967-5868/Crown Copyright Ó 2014 Published by Elsevier Ltd. All rights reserved.

Please cite this article in press as: Connolly AM et al. Caring for children and adolescents with epilepsy: Creating an innovative electronic educational resource. J Clin Neurosci (2014), http://dx.doi.org/10.1016/j.jocn.2014.02.019

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A.M. Connolly et al. / Journal of Clinical Neuroscience xxx (2014) xxx–xxx

included. All material is available to families, with additional carerfriendly material on the impact of diagnosis, living and coping with epilepsy and explanations of medical terminology. 2.2. Ethics and recruitment The Sydney Children’s Hospitals Network Human Research Ethics Committee approved the study. General paediatricians and families linked to Sydney Children’s Hospital were invited to assess the website. Participants provided informed consent. 2.3. Outcome measures and analysis Design, content and clinical usefulness [5] were evaluated using rating scales. Data were summarised using percent agreement. Open-ended questions explored the most and least helpful aspects of the website and suggestions for improvement [6]. Responses were content analysed for themes. Page hits over the 12 months subsequent to launching were calculated. 3. Results 3.1. Participant and patient characteristics Forty-nine general paediatricians (response rate 77%; female 53%), with a median 12 years of paediatric practice, completed the questionnaire. Thirty-three percent managed 1–10 children with epilepsy per year and 35% managed 11–20 children. Thirty-two carers (response rate 67%; mothers 97%) completed the questionnaire. Fifty-six percent of children were female, with a mean age of 7 years (range 1–18), median age of onset 3 years (range 3 days–10 years) and median duration of epilepsy 3 years (range 2 months–12 years). Epilepsy syndrome was focal in 59% of children and generalised in 41%. 3.2. Consumer evaluation The majority of participants rated the website as well designed, practical, informative and clinically useful (Table 1). All general paediatricians indicated they would refer families to the website. They considered the ‘‘Medication’’, ‘‘Epilepsy Management Documents’’ and ‘‘Family’’ pages most helpful. Carers regarded the ‘‘Family Resources’’, ‘‘Coping with Epilepsy’’ and ‘‘Living with Epilepsy’’ pages most useful. Suggestions for improvement most commonly related to expanded content. Comments on design and content were favourable. For example, a general paediatrician stated ‘‘The content is quite exhaustive in a lot of practical levels, Table 1 General paediatrician and carer evaluation of design, content and clinical usefulness of the website General paediatrician (n = 49)

Carer (n = 32)

Design Easy to Navigate Information Organised Information Easy to Find Visually Appealing

49 (100%) 48 (98%) 48 (98%) 46 (94%)

32 (100%) 31 (97%) 30 (94%) 27 (84%)

Content Practical Understandable Complete

48 (98%) 48 (98%) 41 (84%)

30 (94%) 29 (91%) 24 (75%)

Clinical usefulness Aid in Management

47 (96%)

22 (69%)

Data are presented as number (percent agreement). The percent agreement combines the ‘‘strongly agree’’ and ‘‘agree’’ responses.

highly recommended to both colleagues and families of patients.’’ A carer said the website was ‘‘. . .comprehensive, covers information [on] all stages of an epilepsy person’s life from childhood, teenage to adulthood [and] encompasses information for the whole family’s wellbeing, not just the person affected by epilepsy. . .’’. The website received 120,000 page hits in the first year of availability. 4. Discussion A professional and patient orientated Australian paediatric epilepsy website was developed. It provides the paediatrician with high quality evidence-based resources and education focusing on standardised care. It is accessible to all those caring for children and adolescents with epilepsy and its online modality makes it available to clinicians in the community and rural setting. The website brings together, in one location, clinically relevant and practical information for the management of paediatric epilepsy for clinicians and families. This is the uniqueness of the resource. The majority of participants rated the website as well designed, practical, informative and clinically useful. Qualitative data confirmed this result. General paediatricians highlighted the ‘‘Medications’’ and ‘‘Epilepsy Management Documents’’ as most helpful. These pages provide accurate information on common and new drugs, including dosage escalation and adverse effects. The family section was endorsed by general paediatricians as valuable for family reference. Carers highlighted the ‘‘Family Resources’’ section as most helpful. These pages provide helpful websites and support services (such as employment and mental health). The ‘‘Coping with Epilepsy’’ pages were also valued, providing insight into the emotional burden of diagnosis. Information on safety, lifestyle, driving, pregnancy and contraception are most relevant as the adolescent becomes increasingly responsible for their own health care management. This website model has the potential to decrease the burden on tertiary care and is directly translatable to other disease processes in any paediatric sub-speciality. Conflicts of Interest/Disclosures The authors declare that they have no financial or other conflicts of interest in relation to this research and its publication. Acknowledgements We thank our colleagues at the Sydney Children’s Hospitals Network who contributed material and expertise to the website content. We particularly thank the NSW Complex Epilepsy Service, Greater Eastern and Southern NSW Child Health Network and NSW Kids & Families for funding and support in the development of the website. References [1] Camfield P, Camfield C. The office management of epilepsy. Semin Pediatr Neurol 2006;13:201–7. [2] Montouris G. How will primary care physicians, specialists and managed care treat epilepsy in the new millennium. Neurology 2000;55:S42–4. [3] Frost S, Crawford P, Mera S, et al. Implementing good practice in epilepsy care. Seizure 2003;12:77–84. [4] Buelow JM, Shore CP. Childhood epilepsy: failures along the path to diagnosis and treatment. Epilepsy Behav 2006;9:440–7. [5] Mayer DK, Ratichek S, Berhe H, et al. Development of a health-related website for parents of children receiving hematopoietic stem cell transplant: HSCTCHESS. J Cancer Surviv 2010;4:67–73. [6] Brookfield SD. Becoming a critically reflective teacher, San Francisco. CA: Jossey-Bass Publishers; 1995.

Please cite this article in press as: Connolly AM et al. Caring for children and adolescents with epilepsy: Creating an innovative electronic educational resource. J Clin Neurosci (2014), http://dx.doi.org/10.1016/j.jocn.2014.02.019