TRANSITION OF EPILEPSY CARE FROM CHILDREN TO ADULTS
Transition to adult care for children with epilepsy—A call for action Orrin Devinsky Epilepsia, 55(Suppl.3):54–55, 2014 doi: 10.1111/epi.12630
Dr. Devinsky is Professor of Neurology, Neurosurgery, and Psychiatry at NYU Langone School of Medicine and Director of the NYU Comprehensive Epilepsy Center and the Saint Barnabas Institute of Neurology and Neurosurgery (INN).
mal except for epilepsy, the transition is less rocky and perilous, but there are frequently missed opportunities to maintain or improve health. Concrete steps can be taken and standards should be developed to protect adolescents with epilepsy as they morph into adults, especially those who cannot advocate for their own best interests. Whenever a developmentally disabled child, adolescent, or young adult transitions to a new neurologist, there should be a summary letter that concisely provides critical information, such as past and current diagnoses, previously used antiepileptic drugs and their side effects and efficacy (or lack thereof), previous experiences (such as severe behavioral toxicity with a drug), strategies to treat seizure clusters, and personal features that humanize the “patient” (such as their love of horses or fear of needles). The lack of this basic level of community is tragic. I cared for one patient who went into convulsive status when I attempted to get him off phenytoin
Few groups are more vulnerable than those with epilepsy as they transition from adolescence to adulthood. This is especially true for those with developmental disabilities. Sadly, it is often a migration from a family and medical care that is nurturing and coordinated to a “system” with medical care that is limited and fragmented. In many cases, young adults move from their home and pediatrician/pediatric neurologist to a residential home where new doctors assume their care but never become intimate with their history or the nuances of their care. And silently, many others linger at home, isolated, and cared for by frail elderly parents for far too long. For those adolescents who are neurologically norAccepted March 13, 2014. NYU Epilepsy Center, New York, New York, U.S.A. Address correspondence to Orrin Devinsky, NYU Epilepsy Center, 223 E 34 Street, New York, NY 10016, U.S.A. E-mail: [email protected] Wiley Periodicals, Inc. © 2014 International League Against Epilepsy
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55 Transition to Adult Care for Children with Epilepsy and put him on a newer first-line drug for focal epilepsy, only to discover months later from a sibling who lived far away that this exact sequence had happened twice before. But no one in the group home knew and it was nowhere in the records that were available to me when I took over the patient’s care at age 30 years. Our epilepsy community should help to develop standards to make sure the transition is smooth, and also that quality of care is maintained. For developmentally disabled patients with normal or near-normal neurologic function, we need to better educate them about the dangers of missed medication, excess alcohol, other recreational drugs, sleep deprivation, changes in circadian rhythm, stress, and other factors that can provoke seizures. In many cases, the triggers are specific and identifying them is a critical step in achieving and maintaining seizure freedom. The transition is also a time to talk about the risks of epilepsy and the consequences of breakthrough seizures, especially tonic–clonic seizures. Poorly controlled epilepsy is
associated with higher rates of cognitive and behavioral problems—from short-term memory loss to depression and psychosis. Poorly controlled epilepsy is also associated with a higher rate of sudden unexplained death in epilepsy (SUDEP). Caretakers and patients with sufficient intellect should be counseled about SUDEP, other epilepsy-related mortalities (e.g., status epilepticus, drowning, motor vehicle and other accidents, and suicide), and the morbidities of epilepsy—so they can make medication adherence, sleep, and other lifestyle issues a priority. This supplement provides a long-needed spotlight on the problem of transition of care. It is a critical first step that highlights our deficiencies. It is a call for action.
Disclosure The author has no conflict of interest to disclose in relation to this paper. I confirm that I have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Epilepsia, 55(Suppl.3):54–55, 2014 doi: 10.1111/epi.12630
Transition to adult care for children with epilepsy—A call for action Orrin Devinsky Epilepsia, 55(Suppl.3):54–55, 2014 doi: 10.1111/epi.12630
Dr. Devinsky is Professor of Neurology, Neurosurgery, and Psychiatry at NYU Langone School of Medicine and Director of the NYU Comprehensive Epilepsy Center and the Saint Barnabas Institute of Neurology and Neurosurgery (INN).
mal except for epilepsy, the transition is less rocky and perilous, but there are frequently missed opportunities to maintain or improve health. Concrete steps can be taken and standards should be developed to protect adolescents with epilepsy as they morph into adults, especially those who cannot advocate for their own best interests. Whenever a developmentally disabled child, adolescent, or young adult transitions to a new neurologist, there should be a summary letter that concisely provides critical information, such as past and current diagnoses, previously used antiepileptic drugs and their side effects and efficacy (or lack thereof), previous experiences (such as severe behavioral toxicity with a drug), strategies to treat seizure clusters, and personal features that humanize the “patient” (such as their love of horses or fear of needles). The lack of this basic level of community is tragic. I cared for one patient who went into convulsive status when I attempted to get him off phenytoin
Few groups are more vulnerable than those with epilepsy as they transition from adolescence to adulthood. This is especially true for those with developmental disabilities. Sadly, it is often a migration from a family and medical care that is nurturing and coordinated to a “system” with medical care that is limited and fragmented. In many cases, young adults move from their home and pediatrician/pediatric neurologist to a residential home where new doctors assume their care but never become intimate with their history or the nuances of their care. And silently, many others linger at home, isolated, and cared for by frail elderly parents for far too long. For those adolescents who are neurologically norAccepted March 13, 2014. NYU Epilepsy Center, New York, New York, U.S.A. Address correspondence to Orrin Devinsky, NYU Epilepsy Center, 223 E 34 Street, New York, NY 10016, U.S.A. E-mail: [email protected] Wiley Periodicals, Inc. © 2014 International League Against Epilepsy
54
55 Transition to Adult Care for Children with Epilepsy and put him on a newer first-line drug for focal epilepsy, only to discover months later from a sibling who lived far away that this exact sequence had happened twice before. But no one in the group home knew and it was nowhere in the records that were available to me when I took over the patient’s care at age 30 years. Our epilepsy community should help to develop standards to make sure the transition is smooth, and also that quality of care is maintained. For developmentally disabled patients with normal or near-normal neurologic function, we need to better educate them about the dangers of missed medication, excess alcohol, other recreational drugs, sleep deprivation, changes in circadian rhythm, stress, and other factors that can provoke seizures. In many cases, the triggers are specific and identifying them is a critical step in achieving and maintaining seizure freedom. The transition is also a time to talk about the risks of epilepsy and the consequences of breakthrough seizures, especially tonic–clonic seizures. Poorly controlled epilepsy is
associated with higher rates of cognitive and behavioral problems—from short-term memory loss to depression and psychosis. Poorly controlled epilepsy is also associated with a higher rate of sudden unexplained death in epilepsy (SUDEP). Caretakers and patients with sufficient intellect should be counseled about SUDEP, other epilepsy-related mortalities (e.g., status epilepticus, drowning, motor vehicle and other accidents, and suicide), and the morbidities of epilepsy—so they can make medication adherence, sleep, and other lifestyle issues a priority. This supplement provides a long-needed spotlight on the problem of transition of care. It is a critical first step that highlights our deficiencies. It is a call for action.
Disclosure The author has no conflict of interest to disclose in relation to this paper. I confirm that I have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Epilepsia, 55(Suppl.3):54–55, 2014 doi: 10.1111/epi.12630
