Epilepsy Transition in Ambulatory Care: Experiences and Benefits of an Epilepsy Transition Team

Abstract

Epilepsy is the fourth most common neurological disorder and affects people of all ages; however, at least 40% of children will continue to have seizures into adulthood. Children and youth with epilepsy (CYE) experience neurologic and extraneurologic changes that can negatively impact self-management skills necessary for optimal adult function. Those with intellectual disability have additional transition challenges. Improving the medical transition process for all CYE is vital and necessary. In this article, we will review some of the biologic, behavioral, psychologic, therapeutic, and social considerations for CYE complicating transition. We will then describe general approaches to transitioning CYE to adult care, specifically methods involving creating a framework with overarching transition aims in place, and share our experience at the Children's Hospital of Philadelphia implementing these approaches. Our comprehensive model for a formal transition policy, team structure, and ongoing assessment supporting CYE transitioning into adult care is a practical program that can be integrated into clinical care. Proper investment in the transition process will translate into measurable, significant long-term benefits for all involved.

Keywords

children and youth with epilepsy - transition - epilepsy

Publication History

Received: 28 July 2020

Accepted: 06 August 2020

Article published online:
01 October 2020

• References

• 1 Epilepsy Data and Statistics | CDC. Available at: https://www.cdc.gov/epilepsy/data/index.html (PMID: . Published January 28, 2019. Accessed June 14, 2020)
• 2 Camfield P, Camfield C, Busiah K, Cohen D, Pack A, Nabbout R. The transition from pediatric to adult care for youth with epilepsy: basic biological, sociological, and psychological issues. Epilepsy Behav 2017; 69: 170-176
• 3 Rajendran S, Iyer A. Epilepsy: addressing the transition from pediatric to adult care. Adolesc Health Med Ther 2016; 7: 77-87
• 4 Casey BJ, Getz S, Galvan A. The adolescent brain. Dev Rev 2008; 28 (01) 62-77
• 5 Nabbout R, Andrade DM, Bahi-Buisson N. et al. Outcome of childhood-onset epilepsy from adolescence to adulthood: transition issues. Epilepsy Behav 2017; 69: 161-169
• 6 Oskoui M, Wolfson C. Treatment comfort of adult neurologists in childhood onset conditions. Can J Neurol Sci 2012; 39 (02) 202-205
• 7 Larivière-Bastien D, Bell E, Majnemer A, Shevell M, Racine E. Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems. Semin Pediatr Neurol 2013; 20 (02) 154-159
• 8 de Vries PJ, Whittemore VH, Leclezio L. et al. Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist. Pediatr Neurol 2015; 52 (01) 25-35
• 9 Van Lierde A, Menni F, Bedeschi MF. et al. Healthcare transition in patients with rare genetic disorders with and without developmental disability: neurofibromatosis 1 and Williams-Beuren syndrome. Am J Med Genet A 2013; 161A [phone]
• 10 Both P, Ten Holt L, Mous S. et al. Tuberous sclerosis complex: concerns and needs of patients and parents from the transitional period to adulthood. Epilepsy Behav 2018; 83: 13-21
• 11 Nabbout R, Camfield CS, Andrade DM. et al. Treatment issues for children with epilepsy transitioning to adult care. Epilepsy Behav 2017; 69: 153-160
• 12 Andrade DM, Bassett AS, Bercovici E. et al. Epilepsy: transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force. Epilepsia 2017; 58 (09) 1502-1517
• 13 Epilepsy Foundation | epilepsy.com. Epilepsy Foundation. Accessed June 16, 2020 at: https://www.epilepsy.com/
• 14 Sudden Unexpected Death in Epilepsy (SUDEP) | CDC. Published May 13, 2020. Accessed June 16, 2020 at: https://www.cdc.gov/epilepsy/about/sudep/index.htm
• 15 Shogren KA, Plotner AJ. Transition planning for students with intellectual disability, autism, or other disabilities: data from the National Longitudinal Transition Study-2. Intellect Dev Disabil 2012; 50 (01) 16-30
• 16 O'Sullivan-Oliveira J, Fernandes SM, Borges LF, Fishman LN. Transition of pediatric patients to adult care: an analysis of provider perceptions across discipline and role. Pediatr Nurs 2014; 40 (03) 113-120 , 142
• 17 GotTransition.org, Got Transition® - Health Care Providers. GotTransition.org. Accessed June 14, 2020 at: https://gottransition.org/providers/index.cfm
• 18 Kuchenbuch M, Chemaly N, Chiron C, Dulac O, Nabbout R. Transition and transfer from pediatric to adult health care in epilepsy: a families' survey on Dravet syndrome. Epilepsy Behav 2013; 29 (01) 161-165
• 19 Brown LW, Camfield P, Capers M. et al. The neurologist's role in supporting transition to adult health care: a consensus statement. Neurology 2016; 87 (08) 835-840
• 20 US Census Bureau. Data. Accessed June 17, 2020 at: https://www.census.gov/data.html
• 21 The Children's Hospital of Philadelphia, Transition to Adult Care—Outpatient Specialty Care and Primary Care. Accessed June 16, 2020 at: https://www.chop.edu/clinical-pathway/transition-adult-care-outpatient-specialty-care-and-primary-care
• 22 The Children's Hospital of Philadelphia, Transition to Adult Care—Patient with Suspected or Diagnosed Intellectual Disability, Developmental Disability (Delay) or Autism — Clinical Pathway. Accessed June 16, 2020 at: https://www.chop.edu/clinical-pathway/transition-adult-care-patient-suspected-or-diagnosed-intellectual-disability
• 23 Sawicki GS, Lukens-Bull K, Yin X. et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. J Pediatr Psychol 2011; 36 (02) 160-171
• 24 Joshi S, Clark S, Beimer N. et al. Developing an Instrument for Screening of Transition Readiness for Adolescents with Epilepsy. Presented at: Child Neurology Society 2019 Annual Meeting. Oct 23–26, 2019; Charlotte, NC. Abstract 50