Young Peoples Opinions and Expectations of Epilepsies Clinics

Young Peoples Opinions and Expectations of Epilepsies Clinics

Young Peoples Opinions and Expectations of Epilepsies Clinics
Katy Smith , Berni Waldron2, Catie Picton2, Christine Hayes3, Colin Dunkley4, Jane Williams5, Judith Lanfear6, William P Whitehouse1;
School 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
1

1

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

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

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

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.

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