Transition and Transfer: the rocky road from pediatric to adult epilepsy care
Peter Camfield MD, FRCP(C)
Carol Camfield MD, FRCP(C)
A wise senior child neurologist suggested to us that if we did our job properly in pediatric epilepsy there would be no one to pass along to our adult colleagues. We wish it were so simple! About 50% of epilepsy that begins in childhood persists into the adult years. In our experience, the two biggest groups are patients with mental handicap (with a variety of epilepsy syndromes) and patients with idiopathic generalized epilepsy, especially Juvenile Myoclonic Epilepsy. There are others with cryptogenic or symptomatic partial epilepsies whose disorder resembles the partial epilepsies of adulthood.
It is not easy to successfully navigate adolescence with persistent epilepsy. The epilepsy adds special restraints – regular sleep hours, regular medication, no alcohol, and some restrictions on activities, especially driving, uncertainty about contraceptive efficacy for girls. Epilepsy is a hidden handicap that can only be understood by others if they are told about it. Yet, we know that more that 50% of US teenagers would not date someone with epilepsy and view epilepsy as a mental illness. So how would you develop the courage to tell others?
Pediatric epilepsy care is family focused. Adult epilepsy care tends to be focused on the individual. When you are child, your parents make sure that you don’t forget your medication and direct you to go to bed early. Your doctor concurs with this approach. When you are an adult, you learn that all this is your choice, but you may not understand the consequences of poor compliance or poor lifestyle choices. Your adult doctor may not seem to care as long as you understand the facts and make your choices.
Simple transfer from pediatric to adult is potentially brutal (1). The child, now adult, does not understand his/her illness well – much of the family instruction was years ago and directed to the parents. The adult epileptologist only has a case summary and is unlikely to really understand how much of a burden epilepsy is to an adolescent, even if the seizures are well controlled.
Transition from pediatric to adult care is conceptually more attractive. Transition means that the adolescent, family and adult epileptologist all learn the critical steps to allow the youth with epilepsy to be treated in the adult world. Transition is a process that takes time and needs to begin in the pediatric setting. The adolescent learns what they need to know to explain their disorder. They learn the names of the drugs, the doses, the side effects and what needs to be done to fill a prescription. They understand that they have epilepsy but are not “epileptic”. Transition for epilepsy care can take many forms but is virtually undescribed in peer-reviewed literature. Without any data to support our contention, we think that a transition clinic that is staffed by both adult and pediatric epilepsy specialists is needed. A number of joint adult/pediatric visits should take place until transfer to adult care is deemed appropriate. The family needs to see that the pediatric team is still involved and that communication with the adult team is complete. The adult team needs to understand at what stage this particular adolescent is in the process of becoming an adult and design a therapeutic approach that is appropriate. If the adolescent is still in the “invulnerable stage” (nothing bad can happen to me), then more family involvement is needed. The pediatric team needs to “back off” to allow the adolescent to take responsibility.
The situation is quite different when the adolescent/youth has mental handicap. It is worth remembering that possibly 50% of epilepsy that starts in childhood and persists into adulthood is accompanied by mental handicap. Now parents and guardians must have an ongoing supervisory role. But, how much is too much and how much is too little?
Pediatric epilepsy specialists should have a fairly good understanding of how much independent judgment by these special adolescents is possible. This is likely more difficult for the adult neurologist. And where do the parents fit in? Suddenly, the individual focused adult health care system breaks down because the patients with mental handicap cannot represent themselves completely.
Parents have many years of trust in the pediatric system and need to be convinced that the adult system is equally nurturing, but it rarely is. They know when things are not going well but they may not know what to do about these issues in the adult system. Eventually the parents will need to surrender this responsibility to someone else – a guardian or an institution. So, the transition is more for the parents than the patient. The adult physician has few models and little experience in this arena. We often hear from our adult colleagues that they like children but could not deal with parents. If the child is mentally handicapped, there is no escape from the parents. In our experience, parents of a mentally handicapped adolescent with longstanding epilepsy are often very reluctant to take adult neurology advice – a new drug or consideration of an operation is threatening. They have come to accept a status quo that may not be acceptable in the eyes of the adult team.
Pediatric epileptologists also are giving up years of continual medical care for the patient and a long-standing friendship and bond with the family. Helping them cope over time is one of the main joys of pediatrics – and to lose this connection is hard. There is a transition for the pediatric epilepsy specialist also!
We are aware of few publications about transition and epilepsy. One paper describes a very personal transfer of care – the pediatric epileptologist and the adult epileptologist met together once with the family (2). There was no outcome measure – just a description of the process. Another paper describes an epilepsy adolescent clinic and some of the changes in medical prescriptions (3). Frankly, the literature in other chronic diseases of childhood is not much better. We know that in youth with diabetes and asthma often the transfer does not take place properly and the young adult may go without medical care for many critical years. Family physicians have not been very involved in the child’s care and in the eyes of the family are generally not significant contributors to ongoing care. For youth with epilepsy that persists into adulthood, we know that the social outcome, even for those with normal intelligence, is unsatisfactory in 30-50%. We know that for those with serious mental handicap and persistent seizures, adult neurology visits are relatively rare and newer medications are typically not prescribed. In summary, the epilepsy community handles transition or transfer of care poorly.
What needs to happen? Every centre needs to identify one or more adult epileptologists who are willing to participate in a structured transition clinic. Willingness must mean not just the prescription of medication but also major efforts at education, social integration and rehabilitation. Obviously, such an approach does not guarantee success, but it should be better than what we are currently doing.
Epilepsy.com/Professionals Announcements from Joseph I. Sirven, MD, Editor-in-Chief
Happy Fourth of July!!
I hope that you are enjoying the summer. Please join us for our other offerings on Epilepsy.com/Professionals this month. Check out Cognition Across the Lifespan: Antiepileptic Drugs, Epilepsy, or Both? It is a Roundtable discussion webcast hosted by Joyce Cramer, President of the ETP featuring discussion with Bruce Hermann, PhD, Kimford Meador, MD and William Gaillard, MD.
We continue with our Hallway Conversations this month with three scheduled interviews: July 6, we speak to Alison Pack, MD about epilepsy and bone health. On July 13, we offer 2 Hallway Conversations: Katherine Noe, MD, PhD discussed her recently published study on safety! in the Epilepsy Monitoring unit and Selim Benbadis joins us to talk about the latest findings in the management of Nonepileptic/ Psychogenic seizures.
Announcing New Grant Opportunities – Letters of Intent Due August 3
New grant opportunities are being made available through the Epilepsy Research Foundation’s New Therapy Grants Program. These will be awarded to scientific and clinical investigators pursuing innovative projects that demonstrate a clear path to commercialization. To view the request for proposals and to apply, please visit www.epilepsy.com/etp/grant_application.
Reviewed by Joseph I. Sirven, M.D., Editor-in-Chief
Submitted June 30, 2009
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