Journal of Pediatric Epilepsy 2020; 09(04): 172-176
DOI: 10.1055/s-0040-1717135
Review Article

Transitioning Ambulatory Medicine from Pediatrics to Adult Care for Patients with Epilepsy and Intellectual Disability

1  Department of Pediatrics and Child Neurology, Indiana University Graduate Medical Education, Indianapolis, Indiana, United States
,
Marcia Felker
2  Department of Child Neurology, Indiana University Child Neurology, Indianapolis, Indiana, United States
,
Mary Ciccarelli
3  Department of Medicine and Pediatrics, Indiana University Medicine and Pediatrics, Indianapolis, Indiana, United States
› Author Affiliations

Abstract

Consensus statements and clinical reports exist to guide the transition of youth from pediatric to adult healthcare services. Across the range of youth with no chronic health conditions to those with the most complex disabilities, the standards of practice continue to vary broadly across the country and internationally. Youth and young adults with combined conditions of epilepsy with intellectual disability are a small subset of the total population of young adults who share common needs. These include a system of supports that supplement each person's limitations in autonomy and self-management. Caregivers play significant roles in their lives, whether they are family members or paid direct service providers. Medical decision making and treatment adherence require specific adaptations for patients whose independence due to disability is unlikely. Key issues related to tuberous sclerosis complex, neurofibromatosis, and Rett and Sturge–Weber syndromes will be highlighted.



Publication History

Received: 28 July 2020

Accepted: 06 August 2020

Publication Date:
30 September 2020 (online)

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