KEY LEARNING POINTS

1. The Teenager Epilepsy Clinic PEM Smith & F Gibbon Cardiff & Vale University Local Health Board EPILEPSY SERVICE DEVELOPMENT DIRECTIVE REQUIREMENT: Health and social care planners will ensure appropriate arrangements are in place to support the transition of children and young people from paediatric to adult services in line with emerging guidance. • DIAGNOSIS • Correct diagnosis is essential in young people, this has to involve carefully reviewing the history: there is no shortcut • Misdiagnosis of epilepsy may be disastrous for education, employment, driving, unnecessary medication (including teratogenicity risk) and diminished self-esteem • Some epilepsies present in adolescence (e.g. juvenile myoclonic epilepsy) and some non-epilepsies typically begin at this age (vasovagal syncope) • Investigations from childhood may need to be repeated in the teenager • KEY LEARNING POINTS • Teenagers’ problemsare greatly compounded by the additional burden of a chronic disorder such as epilepsy • Epilepsy in teenagers and its treatment, directly impact upon relationships, education and employment prospects, leisure, driving, contraception, pregnancy, parenthood, and the use of alcohol and recreational drugs • Teenagers with epilepsy present specific problems relating to diagnosis, treatment and information needs • The consultation focuses on the teenager with the parents literally taking a back seat • The parents’ role in supporting the teenager with epilepsy must be recognised The Teenager Epilepsy Clinic The principles of consulting with teenagers with epilepsy include: See the teenager in a joint clinic with the Neurologist and the Paediatric Neurologist, with other teenagers or adults rather than children Direct the consultation to the teenager rather than the parents Discuss adult topics such as driving, contraception, pregnancy, alcohol with the teenager Speak to the teenager alone during the consultation, e.g. during the physical examination in another room Encourage responsibility, for example, for self-administering medication Offer written material and a copy of the clinic letter TREATMENT The medication choice depends upon the epilepsy type, the drug’s efficacy and tolerability, and the need to maximise safety in future pregnancy. Compliance may be impaired by denial, fear of side effects, complacency following good seizure control, peer pressure to conform and rebellion. INFORMATION NEEDS OF THE TEENAGER Lifestyle restrictions of epilepsy are of particular interest to the teenager Teenagers need to know of restrictions to career choices, driving, safe use of alcohol, sport (especially swimming), leisure activity (especially cooking, bathing), travel, and VDU and flashing lights exposure It is particularly important to address girls’ information needs concerning contraception and pregnancy