Transition of an adolescent with epilepsy to adult care is a complex process in which both families and health-care providers need to be invested. Not only are there often many more resources for children both in the health-care, education and community settings, but also some important issues and new problems that emerge in this period that deserve special attention. These include
There is a trend toward specialized ‘transition clinics’ or other resources to help smooth this path. The Ontario Epilepsy Strategy is preparing guidelines for transition along with a toolkit and there is good general information about transition at the SickKids Hospital Good2Go program website. In these clinics, there should be involvement of epileptologists on both the pediatric and adult side, so that appropriate screening and investigations can take place and a pediatric ‘discharge package’ can be generated. There needs to be a re-evaluation of diagnosis and treatment plans with respect to seizures as some childhood onset epilepsies go through different phases and as new technologies emerge over time, such as genetic testing or new brain imaging procedures, which may help clarify or change a diagnosis. Management of seizures may not change substantially as individuals move through this path, although certain therapies are more commonly provided to children such as the Ketogenic diet.
Providing information around family planning for adolescent girls and young women is particularly important, as there are known interactions between different drugs. This information is critical to avoid birth control pill failure (e.g., unintentionally becoming pregnant), worsening seizures, and increased risk of birth defects if planning to a pregnancy.
Furthermore, adolescence is a difficult time for most and even more so if the teenager has epilepsy. Conditions such as anxiety, depression, and learning or cognitive disabilities are common but they may not be obvious initially - they may be considered just the ‘natural’ consequence of seizure medication, and may evolve over time. Thus, it is important to screen for psychiatric and cognitive difficulties and to formulate a plan for referral to appropriate specialists for more extensive assessment, treatment planning, or access to services such as provincial Disability Services.
Finally, community epilepsy organizations offer a wealth of information and can, within their resources, provide counselling regarding community, social, legal, and financial support and systems to aid in the youth’s transition to becoming an independent adult. Understanding and managing the readiness of the young person with epilepsy and his/her family for the transition into adulthood is key to ensuring success.