Outcome of childhood-onset epilepsy from adolescence to adulthood: Transition issues

Nabbout, Rima; Andrade, Danielle M.; Bahi‐Buisson, Nadia; Cross, Helen; Desquerre, I.; Dulac, Olivier; Granata, Tiziana; Hirsch, Édouard; Navarro, Vincent; Ouss, Lisa; Pearl, Phillip L.; Schmidt, Dieter; Thiele, Elizabeth A.; Camfield, Peter; Camfield, Carol

doi:10.1016/j.yebeh.2016.11.010

Cited by 45 publications

(43 citation statements)

References 98 publications

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“…It is accepted that adult neurologists, nephrologists, pulmonologists, and psychiatrists should be involved when transitioning healthcare from childhood to adulthood in TSC (Thiele et al, ), but how to organize the transition process is less clear. As stated by Nabbout et al (), a multidisciplinary clinic is probably the ideal mode of care for these individuals, and in our opinion it should be sought whenever possible.…”

Section: Proposal Of Healthcare Transition In Tscmentioning

confidence: 83%

Healthcare transition from childhood to adulthood in Tuberous Sclerosis Complex

Peron

Canevini

Ghelma

et al. 2018

American J of Med Genetics Pt C

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Healthcare transition from childhood to adulthood is required to ensure continuity of care of an increasing number of individuals with chronic conditions surviving into adulthood. The transition for patients with tuberous sclerosis complex (TSC) is complicated by the multisystemic nature of this condition, age‐dependent manifestations, and high clinical variability and by the presence of intellectual disability in at least half of the individuals. In this article, we address the medical needs regarding each TSC‐related manifestation in adulthood, and the services and support required. We review existing models of transition in different chronic conditions, discuss our experience in transitioning from the pediatric to the adult TSC Clinic at our Institution, and propose general rules to follow when establishing a transition program for TSC. Although a generalizable transition model for TSC is likely not feasible for all Institutions, a multidisciplinary TSC clinic is probably the best model, developed in accordance with the resources available and country‐specific healthcare systems. Coordination of care and education of the adult team should be always sought regardless of the transition model.

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Section: Proposal Of Healthcare Transition In Tscmentioning

confidence: 83%

Healthcare transition from childhood to adulthood in Tuberous Sclerosis Complex

Peron

Canevini

Ghelma

et al. 2018

American J of Med Genetics Pt C

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“…A transition working group comprising pediatric and adult health care providers and patient representatives identified 7 steps to maximize a successful transition (Table ) and highlighted psychiatric issues such as ADHD as a factor that may increase the risk of unsatisfactory transfer . Another report from the Transition in Epilepsies symposium identified ADHD as a treatable disorder that may interfere with transition and successful adulthood …”

Section: Resultsmentioning

confidence: 99%

“…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. Treatment of ADHD declines sharply from childhood through young adulthood despite persistence of functional impairment.…”

Section: What Is the Recommended Follow-up And Transition Of Childrmentioning

confidence: 99%

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

et al. 2018

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Attention-deficit/hyperactivity disorder (ADHD) is a common and challenging comorbidity affecting many children with epilepsy. A working group under the International League Against Epilepsy (ILAE) Pediatric Commission identified key questions on the identification and management of ADHD in children with epilepsy. Systematic reviews of the evidence to support approaches to these questions were collated and graded using criteria from the American Academy of Neurology Practice Parameter. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) requirements were followed, with PROSPERO registration (CRD42018094617). No increased risk of ADHD in boys with epilepsy compared to girls with epilepsy was found (Level A). Valproate use in pregnancy is associated with inattentiveness and hyperactivity in offspring (1 class I study), and children with intellectual and developmental disabilities are at increased risk of ADHD (Level A). Impact of early seizure onset on development of ADHD was unclear (Level U), but more evident with poor seizure control (Level B). ADHD screening should be performed from 6 years of age, or at diagnosis, and repeated annually (Level U) and reevaluated after change of antiepileptic drug (AED) (Level U). Diagnosis should involve health practitioners with expert training in ADHD (Level U). Use of the Strength and Difficulties Questionnaire screening tool is supported (Level B). Formal cognitive testing is strongly recommended in children with epilepsy who are struggling at school (Level U). Behavioral problems are more likely with polytherapy than monotherapy (Level C). Valproate can exacerbate attentional issues in children with childhood absence epilepsy (Level A). Methylphenidate is tolerated and effective in children with epilepsy (Level B). Limited evidence supports that atomoxetine is tolerated (Level C). Multidisciplinary involvement in transition and adult ADHD clinics is essential (Level U). In conclusion, although recommendations could be proposed for some of the study questions, this systematic review highlighted the need for more comprehensive and targeted large-population prospective studies.

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“…The meeting took place in France in July 2018 and included 27 participants from France, Germany, UK, Italy, Canada, USA, Colombia, Egypt and India. The previous meetings were summarized in a supplement to Epilepsia in 2014 2 , and three summary papers in a supplement to Epilepsy and Behavior in 2017 3,4,5 . The current symposium focused on various models and realities for epilepsy transition as well as the costs and effectiveness of these programs.…”

Section: Introductionmentioning

confidence: 99%

How can transition to adult care be best orchestrated for adolescents with epilepsy?

Camfield

Andrade

Camfield

et al. 2019

Epilepsy & Behavior

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Objective evidence is limited for the value of transition programs for youth with chronic illness moving from pediatric to adult care; however, such programs intuitively "make sense". We describe the strengths and weaknesses of a variety of transition programs from around the world for adolescents with epilepsy. Consequences of poorly organized transition beyond suboptimal seizure control may include an increased risk of SUDEP, poor psychological and social outcome and inadequate management of comorbidities. The content of transition programs for those with normal intelligence differs from those with intellectual disability but both groups may benefit from an emphasis on sporting activities. Concerns that may interfere with optimal transition include lack of nursing or social work services, limited numbers of adult neurologists/epileptologists confident in the treatment of complex pediatric epilepsy problems, institutional financial support, and time constraints for pediatric and adult physicians who treat epilepsy and the provision of multidisciplinary care. Successful programs eventually need to rely on a several adult physicians, nurses and other key health care providers and use novel approaches to complex care. More research is needed to document the value and effectiveness of transition programs for youth with epilepsy to persuade institutions and health care professionals to support these ventures.

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Outcome of childhood-onset epilepsy from adolescence to adulthood: Transition issues

Cited by 45 publications

References 98 publications

Healthcare transition from childhood to adulthood in Tuberous Sclerosis Complex

Healthcare transition from childhood to adulthood in Tuberous Sclerosis Complex

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

How can transition to adult care be best orchestrated for adolescents with epilepsy?

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