Abstracts

Rationale: Specialist teenage epilepsy clinics play an important role in catering for the specific needs of adolescents with epilepsy. This study aimed to ascertain the opinions and expectations of young people with epilepsies, attending hospital, as out-patients. Methods: Two questionnaires were administered to all young people who attended the Young Person’s Seizure Clinic (YPSC) in Nottingham, where feasible. The Young Person’s Impact of Epilepsy Scale(1), evaluated the impact of epilepsy on different life areas. The ‘Teenage Views on Outpatient Clinics and Seizure Knowledge’ was an in-house questionnaire which enquired about positive and negative experiences of previous clinics, patient’s preferences regarding clinic format, their expectations and information needs. It evaluated knowledge levels relating to understanding of epilepsy and its treatment, and the young people’s opinion of their medical care. Also the YPSC was independently evaluated according to the National Institute of Clinical Excellence (NICE) guidelines for care of young people with epilepsy and young women of childbearing potential with epilepsy(2). Results: 74 young people aged 12-18 years completed the Impact questionnaire. 26 (35%) felt epilepsy and its’ treatment had a significant impact on their lives. The areas of highest impact were shown to be on education, future plans and ambitions, the way young people felt about themselves, and hobbies and interests. Impact scores were higher with increasing age, seizure frequency, and female gender. 82 young people completed the Teenage views questionnaire. 27 specified information and advice as an important resource of epilepsy clinics. 26 (32%) had no perceived understanding of epilepsy and 45 (55%) did not know their epilepsy type. They expressed a range of views on how the clinic should be organised. The clinic performed well in all 8 areas of the NICE guidelines catering for the physical, psychological and social aspects of young people’s health and providing an appropriate setting for them to obtain important information relevant to their age. Minor improvements were proposed in 5 out of the 8 areas. Conclusions: Young people with epilepsies have expectations regarding their medical care. The YPSC provided an ideal setting for their out-patient care, combining adult and paediatric services to provide for their specific needs. References: 1) Lanfear JH & Baker GA (1995) Young Persons Impact Scale. Cited in young people with epilepsy: perception, attitudes and impact. Epilepsia. Vol.40, Supplement 2, p295. 2)http://www.nice.org.uk/guidance/CG20/niceguidance/doc/English