TRANSITION OF EPILEPSY CARE FROM CHILDREN TO ADULTS
Bringing the transition of epilepsy care from children to adults out of the shadows *Rima Nabbout and †Peter Camfield Epilepsia, 55(Suppl.3):52–53, 2014 doi: 10.1111/epi.12598
The second group of patients develop epilepsy in adolescence, with a small likelihood of remission. Focal epilepsies and juvenile myoclonic epilepsies predominate, and intellectual function is typically normal. These youth are expected to take responsibility for their own health care, but they need to be prepared for this adult role before transfer is completed. Issues related to independent living such driving, adherence to medication regimens, sexuality, employment, and mental health are particularly pertinent. A third group of patients are children with epilepsy whose seizures remit completely in childhood, and yet are left with comorbidities. Examples are childhood absence epilepsy, “benign” rolandic epilepsy, or nonlesional focal epilepsy. Long-term follow-up studies indicate that the adult social life of these patients is often surprisingly unsatisfactory. Unlike the other two groups, these patients may not require expert epilepsy care because their epilepsy is rarely active in adulthood; however, other specialists may be needed, mainly for comorbidities and transition to adult health care is also important. Models of care for transition and transfer vary around the world, with no objective way to indicate which approach is most effective. Few programs have undergone formal evaluation; however, all of these programs are based on the local health care system and cannot be exported and generalized worldwide. One transition/transfer model will not suit all contexts. We emphasize a few basic concepts that should facilitate transition and a successful transfer to avoid a gap between pediatric and adult care. To develop a transition program, the first step is to identify adult neurologists and epileptologists who are willing to care for these special patients. The personal involvement of these dedicated neurologists was the cornerstone in all the models presented. Tremendous benefit is derived from close communication between pediatric and adult health care providers. A careful summary “transfer” note, a copy of relevant pediatric medical records, and a well-organized system for exchange of medical information are important but probably inadequate for many patients. Joint pediatric/adult transition clinics may be the most effective system. In addition to allowing young adults with epilepsy to “grow up” and become more self-reliant,
This supplement documents many issues in epilepsy that make transition and transfer from pediatric to adult health care difficult. Overall 50% of children with epilepsy will become adults with epilepsy, which may last for their entire lives. Many of these patients might have intellectual disability and other comorbidities in addition to seizures. Pediatric epilepsy syndromes and their treatment involve special concerns that need to be addressed if pediatric patients are to have an optimal adult care. This supplement emphasizes issues of transition/transfer from the pediatric perspective, and attempts to bridge the gap to adult medical care. Three broad groupings of patients with epilepsy will achieve transition/transfer. The first group has epilepsy that begins early in life and persists. Many of these patients have concomitant intellectual disability and complex causes for their disorders, particularly genetic. Because many patients will have been diagnosed with epilepsy 15 or more years before transfer, when their etiologic workup was likely less sophisticated, it is prudent for the pediatric team to review the etiology and to complete up-to-date investigations around the time of transfer, with particular emphasis on neuroimaging and genetics. These young adults with epilepsy have little expectation for independent living and will require various degrees of supervision. Incorporating their caretakers into adult health care decision making will be important. Often a multidisciplinary model is applied to care of pediatric patients, a model that appears to be less common in adult care. Special example is seen in patients with tuberous sclerosis or Sturge-Weber disease, where epilepsy may represent only a small part of ongoing health care needs. It is challenging to ensure that all of the care needs and special treatment are addressed after transfer. Accepted February 14, 2014. *Pediatric Neurology Department, Reference Center for Rare Epilepsies, Hospital Necker – Enfants Malades, Paris, France; and †Department of Pediatrics, Dalhousie University and the IWK Health Centre, Halifax, Nova Scotia, Canada Address correspondence to Rima Nabbout, Pediatric Neurology Department, Reference Center for Rare Epilepsies, Necker Hospital, 149 rue de Sevres, 75015 Paris, France. E-mail: [email protected] Wiley Periodicals, Inc. © 2014 International League Against Epilepsy
52
53 Improving the Transition in Epilepsies the careful review that takes place in such joint clinics is known to lead to major changes in diagnosis and treatment that can eliminate a lifetime of inappropriate care. Treatments for epilepsy will undoubtedly improve over time. As pediatric patients become adults, they will benefit from being aware of the most effective treatments available for their specific epilepsy syndrome. Physicians should encourage patient and parent involvement in Internet support groups, because they may be more
effective than health care professionals in providing upto-date information.
Disclosure None of the authors has any conflict of interest to disclose in relation to this article. We confirm that we 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):52–53, 2014 doi: 10.1111/epi.12598
Bringing the transition of epilepsy care from children to adults out of the shadows *Rima Nabbout and †Peter Camfield Epilepsia, 55(Suppl.3):52–53, 2014 doi: 10.1111/epi.12598
The second group of patients develop epilepsy in adolescence, with a small likelihood of remission. Focal epilepsies and juvenile myoclonic epilepsies predominate, and intellectual function is typically normal. These youth are expected to take responsibility for their own health care, but they need to be prepared for this adult role before transfer is completed. Issues related to independent living such driving, adherence to medication regimens, sexuality, employment, and mental health are particularly pertinent. A third group of patients are children with epilepsy whose seizures remit completely in childhood, and yet are left with comorbidities. Examples are childhood absence epilepsy, “benign” rolandic epilepsy, or nonlesional focal epilepsy. Long-term follow-up studies indicate that the adult social life of these patients is often surprisingly unsatisfactory. Unlike the other two groups, these patients may not require expert epilepsy care because their epilepsy is rarely active in adulthood; however, other specialists may be needed, mainly for comorbidities and transition to adult health care is also important. Models of care for transition and transfer vary around the world, with no objective way to indicate which approach is most effective. Few programs have undergone formal evaluation; however, all of these programs are based on the local health care system and cannot be exported and generalized worldwide. One transition/transfer model will not suit all contexts. We emphasize a few basic concepts that should facilitate transition and a successful transfer to avoid a gap between pediatric and adult care. To develop a transition program, the first step is to identify adult neurologists and epileptologists who are willing to care for these special patients. The personal involvement of these dedicated neurologists was the cornerstone in all the models presented. Tremendous benefit is derived from close communication between pediatric and adult health care providers. A careful summary “transfer” note, a copy of relevant pediatric medical records, and a well-organized system for exchange of medical information are important but probably inadequate for many patients. Joint pediatric/adult transition clinics may be the most effective system. In addition to allowing young adults with epilepsy to “grow up” and become more self-reliant,
This supplement documents many issues in epilepsy that make transition and transfer from pediatric to adult health care difficult. Overall 50% of children with epilepsy will become adults with epilepsy, which may last for their entire lives. Many of these patients might have intellectual disability and other comorbidities in addition to seizures. Pediatric epilepsy syndromes and their treatment involve special concerns that need to be addressed if pediatric patients are to have an optimal adult care. This supplement emphasizes issues of transition/transfer from the pediatric perspective, and attempts to bridge the gap to adult medical care. Three broad groupings of patients with epilepsy will achieve transition/transfer. The first group has epilepsy that begins early in life and persists. Many of these patients have concomitant intellectual disability and complex causes for their disorders, particularly genetic. Because many patients will have been diagnosed with epilepsy 15 or more years before transfer, when their etiologic workup was likely less sophisticated, it is prudent for the pediatric team to review the etiology and to complete up-to-date investigations around the time of transfer, with particular emphasis on neuroimaging and genetics. These young adults with epilepsy have little expectation for independent living and will require various degrees of supervision. Incorporating their caretakers into adult health care decision making will be important. Often a multidisciplinary model is applied to care of pediatric patients, a model that appears to be less common in adult care. Special example is seen in patients with tuberous sclerosis or Sturge-Weber disease, where epilepsy may represent only a small part of ongoing health care needs. It is challenging to ensure that all of the care needs and special treatment are addressed after transfer. Accepted February 14, 2014. *Pediatric Neurology Department, Reference Center for Rare Epilepsies, Hospital Necker – Enfants Malades, Paris, France; and †Department of Pediatrics, Dalhousie University and the IWK Health Centre, Halifax, Nova Scotia, Canada Address correspondence to Rima Nabbout, Pediatric Neurology Department, Reference Center for Rare Epilepsies, Necker Hospital, 149 rue de Sevres, 75015 Paris, France. E-mail: [email protected] Wiley Periodicals, Inc. © 2014 International League Against Epilepsy
52
53 Improving the Transition in Epilepsies the careful review that takes place in such joint clinics is known to lead to major changes in diagnosis and treatment that can eliminate a lifetime of inappropriate care. Treatments for epilepsy will undoubtedly improve over time. As pediatric patients become adults, they will benefit from being aware of the most effective treatments available for their specific epilepsy syndrome. Physicians should encourage patient and parent involvement in Internet support groups, because they may be more
effective than health care professionals in providing upto-date information.
Disclosure None of the authors has any conflict of interest to disclose in relation to this article. We confirm that we 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):52–53, 2014 doi: 10.1111/epi.12598
