Transition refers to the planned move from paediatric health services to adult health services.
General Paediatricians or Neurologists will usually be responsible for the medical care of epilepsy patients up to the age of 16.
Around this time, planning for transition to Adult Health Services needs to be considered. The process may start earlier than 16 years to ensure a smooth transition over an extended period and should ideally be completed by the age of 18. Epilepsy patients typically transition to a general practitioner or an adult neurologist depending on medical complexity and patient needs.
Preparing for Transition
PREPARING ADOLESCENTS FOR TRANSITION
In preparing an adolescent with epilepsy for transition to adult healthcare, it is important they are educated on the following in relation to their epilepsy:
- Lifestyle choices and the importance of:
- medication compliance
- wise choices regarding alcohol, drugs, and recreational activities (here)
- Mental health and wellbeing (here)
- Driving rules and regulations (here)
- SUDEP (here)
- Contraception and pregnancy (see pregnancy section here):
- Birth control
- Importance of pre-pregnancy counseling
- Issues of teratogenicity and choice of anti-convulsant
The below checklist and linked resources can also be used to assist in the process of transition:
Ensure the patient understands their diagnosis:
- Encourage patients to complete the Personal Epilepsy Profile with the assistance of their treating doctor.
- Ensure the patient has a First Aid Seizure Management Plan completed by their treating doctor.
- Ensure the patient knows their current medications and doses.
Ensure the patient has an understanding of epilepsy and how to live well with their chronic illness:
- Living Well With Epilepsy (educational video for teenagers and young adults - 10 mins).
- Epilepsy Education Videos for Teens (series of short educational videos covering: epilepsy, seizures, investigations, medications, seizure safety and first aid, and transitioning to adult heathcare).
Ensure the patient understands how the adult healthcare system works:
- Ensure the patient has a local GP.
- Ensure the patient knows the names and contact details of the clinicians they will transition to in adult health.
- Ensure the patient has their own Medicare card, Health Care Card, and knows their private health insurance details if relevant.
- Assist the patient with the transfer of their medical information to the adult treating clinician.
- Transition information and checklists (www.trapeze.org.au)
Trapeze is the specialist transition service for young people with chronic medical conditions who are known to the Sydney Children’s Hospital Network (i.e. Sydney Children’s Hospital, Randwick and Westmead Children’s Hospital).
- They can assist patients by helping them find a GP and arranging a GP Management Plan, providing health coaching and face-to-face support, and linking patients to relevant support groups.
- They can also provide telephone, email, and SMS reminders of patient's upcoming health-related appointments.
- For more information on Trapeze, you can visit their website at www.trapeze.org.au
The Agency for Clinical Innovation (ACI) provides three Transition Care Coordinators across NSW who are based in adult hospitals and provide a state-wide service.
- They can provide patients with information and support (for at least 12 months) once patients transfer from a paediatric to an adult healthcare setting.
- They can help patients find appropriate health services, provide support to attend clinic appointments, and help patients stay in touch with adult health services.
- Contact the Transition Care Coordinators