Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force

Abstract

The transition from a pediatric to adult health care system is challenging for many youths with epilepsy and their families. Recently, the Ministry of Health and Long-Term Care of the Province of Ontario, Canada, created a transition working group (TWG) to develop recommendations for the transition process for patients with epilepsy in the Province of Ontario. Herein we present an executive summary of this work. The TWG was composed of a multidisciplinary group of pediatric and adult epileptologists, psychiatrists, and family doctors from academia and from the community; neurologists from the community; nurses and social workers from pediatric and adult epilepsy programs; adolescent medicine physician specialists; a team of physicians, nurses, and social workers dedicated to patients with complex care needs; a lawyer; an occupational therapist; representatives from community epilepsy agencies; patients with epilepsy; parents of patients with epilepsy and severe intellectual disability; and project managers. Three main areas were addressed: (1) Diagnosis and Management of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial, Community, and Legal Supports. Although there are no systematic studies on the outcomes of transition programs, the impressions of the TWG are as follows. Teenagers at risk of poor transition should be identified early. The care coordination between pediatric and adult neurologists and other specialists should begin before the actual transfer. The transition period is the ideal time to rethink the diagnosis and repeat diagnostic testing where indicated (particularly genetic testing, which now can uncover more etiologies than when patients were initially evaluated many years ago). Some screening tests should be repeated after the move to the adult system. The seven steps proposed herein may facilitate transition, thereby promoting uninterrupted and adequate care for youth with epilepsy leaving the pediatric system.

Systematic review of the screening, diagnosis, and management of ADHD in children with epilepsy. Consensus paper of the Task Force on Comorbidities of the ILAE Pediatric Commission

“…A transition working group comprising pediatric and adult health care providers and patient representatives identified 7 steps to maximize a successful transition (Table S8) and highlighted psychiatric issues such as ADHD as a factor that may increase the risk of unsatisfactory transfer. 85 Another report from the Transition in Epilepsies symposium identified ADHD as a treatable disorder that may interfere with transition and successful adulthood. 86 The National Institute for Health and Care Excellence (NICE) guidelines for transition of adolescents with ADHD were established in the UK in 2008 42 and accepted throughout Europe (class IV), and specific recommendations are listed in Table S6.…”

The experience of the multidisciplinary team in epilepsy management from a resource‐limited country

“…15 Similar to most epilepsy centers, most of our patients had drug-resistant epilepsy, which was necessary for them to start presurgical evaluation. Although pediatric epilepsy is different from adult epilepsy and it seemed suitable for younger patients to remain in a pediatric epilepsy center, there was no special pediatric neurosurgery in our pediatric hospital and our pediatric hospital only treated patients younger than age 14.…”

“…It also reflected a good cooperation between adult and pediatric epilepsy services and offered a convenient transition from a pediatric to an adult epilepsy care center. 15 Similar to most epilepsy centers, most of our patients had drug-resistant epilepsy, which was necessary for them to start presurgical evaluation. Presurgical evaluation was indeed the main purpose of our MDT conference.…”

Schizophrenia is a later‐onset feature ofPCDH19Girls Clustering Epilepsy

“…1,2 The lack of additional published cases with psychotic disorders may be explained by the young age of the majority of girls with PCDH19-GCE. 22,23 Moreover, the association of psychosis in a woman with a history of seizures in childhood may not be considered as related to an underlying PCDH19 pathogenic variant, even where the variant is known. In addition, many adolescent and adult women with ID and seizures are not offered genetic testing, despite recommendations for clinical testing.…”

“…In addition, many adolescent and adult women with ID and seizures are not offered genetic testing, despite recommendations for clinical testing. 22,23 Moreover, the association of psychosis in a woman with a history of seizures in childhood may not be considered as related to an underlying PCDH19 pathogenic variant, even where the variant is known. Currently, there are 9 PCDH19 mosaic males reported in the literature, of whom 7 had behavioral problems, but they are too young (only 3 were aged 13 and 14 years) to determine whether they are at risk of psychosis.…”