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Young Peoples Opinions and Expectations of Epilepsies Clinics Rational Specialist teenage epilepsies clinics play an important role in catering for the.

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Presentation on theme: "Young Peoples Opinions and Expectations of Epilepsies Clinics Rational Specialist teenage epilepsies clinics play an important role in catering for the."— Presentation transcript:

1 Young Peoples Opinions and Expectations of Epilepsies Clinics 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. Methods Two questionnaires were administered to as many of the young people who attend the clinic in Nottingham as was practical. Young Persons Impact of Epilepsy scale 1 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 patients 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. 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 its 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 hadnt 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. Katy Smith 1, Berni Waldron 2, Catie Picton 2, Christine Hayes 3, Colin Dunkley 4, Jane Williams 5, Judith Lanfear 6, William P Whitehouse 1 ; 1 School of Human Development, University of Nottingham; 2 Dept. of Paediatrics, Nottingham University Hospital, 3 Dept. of Neurology, Nottingham University Hospital, 4 Dept. of General Paediatrics, Kings Mill Hospital, Mansfield; 5 Paediatric Neurodisability, Nottingham University Hospital; 6 University of Leeds; UK 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. 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: Conclusions Young people with epilepsies have expectations regarding their medical care. The Young Persons 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. Category% Indicated Career 84 Education 50 Sport 50 Driving 73 Sex and Relationships 35 Genetics 46 Seizure Types 55 Medication and Side Effects 56 Alcohol and Drugs 38 Mood and Behaviour 46 Risk and Safety 51


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