|Relevant tool: A.14|
According to the 2011 JEC report 'Epilepsy prevalence, incidence and other statistics', there are approximately 112,700 people aged 25 years of age and under living with epilepsy in the UK.1
Adolescence is a critical time to engage young people in their health.2 This is when new health behaviours start that continue into adulthood.3 At least 10% of teenagers3 thought to have epilepsy are misdiagnosed, and many have other underlying diseases. Therefore confirming the diagnosis at this stage is important. Young adults are at higher risk of SUDEP than any other age group.4,5
GPs may be well placed to discuss the risk of SUDEP and the importance of adherence to medication and impact of lifestyle. Puberty can be a difficult time due to social, hormonal and psychological changes. Frequent seizures during childhood can interfere with growth and endocrine systems, so a proportion of teenagers with epilepsy will be obese and shorter than average.6
Having epilepsy and taking AEDs can result in sexual dysfunction and infertility. Alterations in interictal sexual behaviour have been frequently reported, particularly in patients with temporal lobe epilepsy (TLE), commonly causing hyposexuality. In addition, some AEDs – those that are metabolised in the hepatic P450 system – can induce hepatic enzymes. This causes increased synthesis of sex hormone binding globuline (SHBG), and increased metabolism of sex hormones. Patients with epilepsy also appear to have altered gonadal function. Hypo and hypersexuality has been reported in both men and women with epilepsy.7
GPs might also be the first point of contact for girls experiencing catamenial seizures and/or menstrual irregularities.6
Young women with epilepsy and their family or carers should be given gender-specific information. This should include a discussion of the impact of their epilepsy, seizures and AEDs on fertility, contraceptive choice, and the health of an unborn baby.8
The cosmetic side-effects of some AEDs may also be a particular problem in young adults, for whom the coarsening of facial features, gum changes, acne, inappropriate hair growth and weight gain can be a specific concern.5,7
The psychological and emotional impact of epilepsy during this sensitive time may lead to low self-esteem and a lack of self-confidence. The timely and accurate provision of advice and counselling is therefore recommended.6
Adolescence is an important time for encouraging young people to self-manage their condition, and to avoid risky health behaviours that could potentially have a detrimental effect on their seizure control. In adolescence new health behaviours are established and maintained into adulthood.2
Topics to discuss with young people include: SUDEP, AED treatment and compliance, lifestyle (drugs, alcohol, driving, sex, sleep), reproduction and contraception, education, career, benefits, and relationships with family, with friends and at school.4
'Upfront' is Epilepsy Action's information booklet for young people with epilepsy. This booklet can be ordered from the Epilepsy Action Helpline on 0808 800 5050.
Epilepsy Action also has a website designed to meet the specific needs of young people: www.epilepsy.org.uk/youngpeople
Paediatric and Adult Services
The needs of young people (aged ≥13 years) and their transition to the adult service should be addressed. A dedicated young person's clinic is a suitable setting to discuss issues appropriate to the age group.3
The results of a 2008 survey showed that just 36% of acute trusts and 33% of primary care trusts provided a transitional care service to young people with epilepsy.9 Although a few more trusts indicated that they planned on creating a transition service in the future, the reality is that many young people will have their care transferred from paediatric care to adult-focused care without access to a transitional care service.
Before transition to adult services is made, diagnosis and management should be reviewed and access to support groups should be facilitated.8
The 2012 NICE guideline on epilepsy states that a named clinician should assume responsibility for the ongoing management of the young person with epilepsy, ensure smooth transition of care to adult services, and be aware of the need for continuing multi-agency support. Your practice should be given contact details of this 'named' person.
Young people should be given information to enable them to feel confident when communicating with their health professionals, and to understand and self-manage their condition.10
1 Joint Epilepsy Council, 2005. Epilepsy prevalence, incidence and other statistics.[online] (Accessed 12/04/2012).
2 Barker M, Viner RM, 2005. Young People's Health: The Need for Action. British Medical Journal. 330: 901-903
3 Chadwick D et al. 1997. Managing the Teenager with Epilepsy: Paediatric to Adult Care. Seizure. 6: 27-30.
4 Scottish Intercollegiate Guidelines Network (SIGN), 2005. Diagnosis and Management of Epilepsies in Children and Young People. A National Clinical Guideline. Edinburgh: SIGN.
5 Cross H, McLellan A, 2002. Advice on Managing Epilepsy in Teenagers. Prescriber. 13(18): 24–39.
6 Epilepsy Action, 2005. Role of Primary Care in Epilepsy Management 2. Leeds: Epilepsy Action.
7 Luef GJ, 2008. Epilepsy and Sexuality. Seizure. 17: 127-30.
8 National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE.
9 Epilepsy Action, 2009. Epilepsy in England: Time for Change. Leeds: Epilepsy Action.
10 McDonagh JE, Jordan A, 2006. Transition: Getting It Right for Young People. Clinical Medicine. 6: 497-500.