Young People’s Opinions and Expectations of Epilepsies Clinics

1. Young People’s Opinions and Expectations of Epilepsies Clinics Katy Smith1, Berni Waldron2, Catie Picton2, Christine Hayes3, Colin Dunkley4, Jane Williams5, Judith Lanfear6, William P Whitehouse1; 1School of Human Development, University of Nottingham; 2Dept. of Paediatrics, Nottingham University Hospital, 3Dept. of Neurology, Nottingham University Hospital, 4Dept. of General Paediatrics, King’s Mill Hospital, Mansfield; 5Paediatric Neurodisability, Nottingham University Hospital; 6University of Leeds; UK Rational Specialist teenage epilepsies clinics play an important role in catering for the specific needs of adolescents with epilepsies. This study aimed to ascertain the opinions and expectations of young people with epilepsies, attending hospital, as out-patients. • Results • 74 young people aged 12-18 years completed • the Impact questionnaire • 82 young people completed the Teenage • views questionnaire • 35% of patients indicated epilepsy and it’s treatment had a significant impact on their life in general (total impact score >18) • Higher impact scores were associated with • previous clinic attendance - increasing age • female gender - high seizure frequency • Previous clinic attendance significantly associated with higher impact in areas of: • - hobbies and interests (p= 0.011) • - overall health (p= 0.012) • - peer relationships (p=0.032) • There were no significant differences between those who had and those who hadn’t attended clinic before regarding: • - opinion of medical care • - understanding of epilepsy • - knowledge of seizure type • - knowledge of medication • - knowledge of epilepsy investigations • But a study with higher power is required • Young people stated epilepsies clinics should have information, entertainment, and opportunities to meet others with epilepsies. The preferred mediums of receiving information were: through nurses (69%), doctors (57%), leaflets (55%) and the internet (49%). A need for information in the following areas was indicated: • Methods • Two questionnaires were administered to as many of the young people who attend the clinic in Nottingham as was practical. • Young Person’s Impact of Epilepsy scale1 • Evaluating the impact of epilepsies on • different life areas and leading to a total • impact of epilepsy score • Compared between genders, age groups, • low and high seizure frequencies, and pre • and post clinic attendance groups • Teenage Views on Outpatient Clinics and • Seizure Knowledge’ • Enquired about patient’s preferences • regarding the format of a clinic, positive and • negative features and their information • needs • Compared epilepsy knowledge levels for • different aspects of epilepsies and their • treatment, • and opinion of medical care for pre and post • clinic attendance groups. Conclusions Young people with epilepsies have expectations regarding their medical care. The Young Person’s Seizure Clinic in Nottingham provides an setting where we can work to fulfil these. We are collecting further data from young people to increase the power of the study to identify significant effects of attending the clinic. Reference 1. Lanfear JH, Baker GA. Young Persons Impact Scale. Cited in young people with epilepsy: perception, attitudes and impact. Epilepsia 1995: 40; S2; 295.