Journal of Pediatric Epilepsy 2020; 09(04): 164-171
DOI: 10.1055/s-0040-1716915
Review Article

Improving Transitional Services for Adolescents and Young Adults with Epilepsy and Intellectual Disability

1  Department of Neurology, Dell Medical School, The University of Texas at Austin, Austin, Texas, United States
2  Comprehensive Pediatric Epilepsy Center, UT Health Austin Pediatric Neurosciences at Dell Children's, Dell Children's Medical Center, Austin, Texas, United States
,
1  Department of Neurology, Dell Medical School, The University of Texas at Austin, Austin, Texas, United States
2  Comprehensive Pediatric Epilepsy Center, UT Health Austin Pediatric Neurosciences at Dell Children's, Dell Children's Medical Center, Austin, Texas, United States
,
1  Department of Neurology, Dell Medical School, The University of Texas at Austin, Austin, Texas, United States
2  Comprehensive Pediatric Epilepsy Center, UT Health Austin Pediatric Neurosciences at Dell Children's, Dell Children's Medical Center, Austin, Texas, United States
,
Angie R. Payne
3  Ascension Seton’s Comprehensive Epilepsy Program, Dell Seton Medical Center at The University of Texas, Austin, Texas, United States
,
Janet K. Wilson
2  Comprehensive Pediatric Epilepsy Center, UT Health Austin Pediatric Neurosciences at Dell Children's, Dell Children's Medical Center, Austin, Texas, United States
,
Elizabeth A. Wedberg-Sivam
3  Ascension Seton’s Comprehensive Epilepsy Program, Dell Seton Medical Center at The University of Texas, Austin, Texas, United States
,
1  Department of Neurology, Dell Medical School, The University of Texas at Austin, Austin, Texas, United States
2  Comprehensive Pediatric Epilepsy Center, UT Health Austin Pediatric Neurosciences at Dell Children's, Dell Children's Medical Center, Austin, Texas, United States
› Author Affiliations
Funding None.

Abstract

The transition from pediatric to adult health care systems is challenging for many adolescents with epilepsy and their families, and those challenges are compounded for adolescents with comorbid intellectual disabilities and epilepsy (ID-E). Many traditional transition pathways to adult care are inadequate, as they fail to address important considerations unique to the ID-E population or are absent entirely. Poor organization of care during critical transition periods increases the risks of sudden unexpected death in epilepsy, suboptimal seizure control, inadequate management of comorbidities, and poor psychological and social outcomes. The literature lacks systematic studies on effective transition programs for this population. The present review provides an overview of the main themes important in care transitions for the ID-E population: (1) precise diagnosis and management of seizures; (2) mental health and medical comorbidities affecting care; (3) accessing behavioral, habilitative, legal, financial, and community resources; and (4) caretaker support. We propose a specific framework which includes targeted recommendations of minimum care standards for youth with ID-E transitioning to adult care.



Publication History

Received: 26 July 2020

Accepted: 12 August 2020

Publication Date:
09 October 2020 (online)

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