Young People

1
Young Peoples 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, Kings 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 its
  treatment had a significant impact on their life
  in general (total impact score gt18)
• 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 (p0.032)
• There were no significant differences between
  those who had and those who hadnt attended
  clinic before regarding
• - opinion of medical care

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
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

• 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 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 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

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.
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.