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

Peter R Camfield¹, Danielle Andrade², Carole S Camfield³, Jaime Carrizosa-Moog⁴, Richard Appleton⁵, Michel Baulac⁶, Lawrence Brown⁷, Eleonor Ben Menachem⁸, Helen Cross⁹, Isabelle Desguerre¹⁰, Christina Grant¹¹, Hassan Hosny¹², Laura Jurasek¹³, Marco Mula¹⁴, Margarete Pfäfflin¹⁵, Sylvain Rheims¹⁶, Howard Ring¹⁷, Renée A Shellhaas¹⁸, K P Vinayan¹⁹, Elaine Wirrell²⁰, Rima Nabbout¹⁰

Affiliations

¹ Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada. Electronic address: camfield@dal.ca.
² Krembil Neurosciences Epilepsy Genetics Program, Division of Neurology, Department of Medicine, Toronto Western Hospital, University of Toronto, Toronto, Canada.
³ Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
⁴ Pediatric Department - Adolescent Service, University of Antioquia School of Medicine, Medellín, Colombia.
⁵ Department of Neurology, Alder Hey Children's Health Park, Liverpool, UK.
⁶ Hopital Pitié-Salpêtrière, Sorbonne Université, Institut du Cerveau et de la Moelle, Paris, France.
⁷ Department of Neurology, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
⁸ Institute of Clinical Neuroscience, Sahlgrenska Academy, Göteborg University, Göteborg, Sweden.
⁹ University College London, Great Ormond Street Institute of Child Health, London, UK; Great Ormond Street Hospital for Children, London, UK.
¹⁰ Department of Pediatric Neurology, Hôpital Necker Enfants Malades, Université Paris Descartes, Institut Imagine (INSERM UMR 1163), Paris, France.
¹¹ Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
¹² Neurology Department, Cairo University, Cairo, Egypt.
¹³ Stollery Childrens Hospital and the University of Alberta, Edmonton, Alberta, Canada.
¹⁴ Institute of Medical and Biomedical Education, St George's University of London, London, UK; The Atkinson Morley Regional Neuroscience Centre, St George's University Hospitals NHS Foundation Trust, London, UK.
¹⁵ Bodelschwingh Foundation Bethel, Bielefeld, Germany.
¹⁶ Department of Functional Neurology and Epileptology, Hospices Civils de Lyon and University of Lyon, Lyon, France; Lyon's Neuroscience Research Center, INSERM U1028, CNRS UMR5292, Lyon, France.
¹⁷ Department of Psychiatry, University of Cambridge, Cambridgeshire and Peterborough NHS Trust, UK.
¹⁸ Department of Pediatrics & Communicable Diseases, Division of Pediatric Neurology, Michigan Medicine, Ann Arbor, MI, USA.
¹⁹ Division of Pediatric Neurology, Department of Neurology, Amrita Institute of Medical Sciences, Cochin, Kerala, India.
²⁰ Divisions of Child and Adolescent Neurology and Epilepsy, Department of Neurology, Mayo Clinic, Rochester, MN, USA.

PMID: 30642688
DOI: 10.1016/j.yebeh.2018.12.015

Review

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

Peter R Camfield et al. Epilepsy Behav. 2019 Apr.

. 2019 Apr:93:138-147.

doi: 10.1016/j.yebeh.2018.12.015. Epub 2019 Jan 12.

Authors

Affiliations

¹ Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada. Electronic address: camfield@dal.ca.
² Krembil Neurosciences Epilepsy Genetics Program, Division of Neurology, Department of Medicine, Toronto Western Hospital, University of Toronto, Toronto, Canada.
³ Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
⁴ Pediatric Department - Adolescent Service, University of Antioquia School of Medicine, Medellín, Colombia.
⁵ Department of Neurology, Alder Hey Children's Health Park, Liverpool, UK.
⁶ Hopital Pitié-Salpêtrière, Sorbonne Université, Institut du Cerveau et de la Moelle, Paris, France.
⁷ Department of Neurology, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
⁸ Institute of Clinical Neuroscience, Sahlgrenska Academy, Göteborg University, Göteborg, Sweden.
⁹ University College London, Great Ormond Street Institute of Child Health, London, UK; Great Ormond Street Hospital for Children, London, UK.
¹⁰ Department of Pediatric Neurology, Hôpital Necker Enfants Malades, Université Paris Descartes, Institut Imagine (INSERM UMR 1163), Paris, France.
¹¹ Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
¹² Neurology Department, Cairo University, Cairo, Egypt.
¹³ Stollery Childrens Hospital and the University of Alberta, Edmonton, Alberta, Canada.
¹⁴ Institute of Medical and Biomedical Education, St George's University of London, London, UK; The Atkinson Morley Regional Neuroscience Centre, St George's University Hospitals NHS Foundation Trust, London, UK.
¹⁵ Bodelschwingh Foundation Bethel, Bielefeld, Germany.
¹⁶ Department of Functional Neurology and Epileptology, Hospices Civils de Lyon and University of Lyon, Lyon, France; Lyon's Neuroscience Research Center, INSERM U1028, CNRS UMR5292, Lyon, France.
¹⁷ Department of Psychiatry, University of Cambridge, Cambridgeshire and Peterborough NHS Trust, UK.
¹⁸ Department of Pediatrics & Communicable Diseases, Division of Pediatric Neurology, Michigan Medicine, Ann Arbor, MI, USA.
¹⁹ Division of Pediatric Neurology, Department of Neurology, Amrita Institute of Medical Sciences, Cochin, Kerala, India.
²⁰ Divisions of Child and Adolescent Neurology and Epilepsy, Department of Neurology, Mayo Clinic, Rochester, MN, USA.

PMID: 30642688
DOI: 10.1016/j.yebeh.2018.12.015

Abstract

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 sudden unexpected death in epilepsy (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 healthcare 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 healthcare professionals to support these ventures.

Keywords: Adolescent; Epilepsy; Intellectual disability; Transition; Transition programs.

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

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

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Medical