Unprepared for Change: Teens with Epilepsy and Mild Intellectual Disabilities Need Essential Transition Skills
Abstract number :
1.384
Submission category :
6. Cormorbidity (Somatic and Psychiatric)
Year :
2024
Submission ID :
1289
Source :
www.aesnet.org
Presentation date :
12/7/2024 12:00:00 AM
Published date :
Authors :
Sarah Healy, MSc., PhD student – Children's Hospital of Eastern Ontario (CHEO)
Maryam Nouri, MD – Children's Health Research Institute
Juan Toro Perez, MD, MSc, CSCN (EEG) – Children's Hospital of Eastern Ontario (CHEO)
Sophia Hrycko, MD – CHEO
Nicholas Mitsakakis, PhD – Children's Hospital of Eastern Ontario (CHEO)
Andrea Andrade, MD – Children's Health Research Institute
Sharon Whiting, MB BS FRCPC – University of Ottawa
Presenting Author: Katherine Muir, MD – University Of Ottawa-Children's Hospital Of Eastern Ontario
Rationale: Research suggests that transition from pediatric to adult care is especially difficult for adolescents with mild intellectual disabilities (MID). Recently-transitioned adults with MID are more likely to stop taking medication, miss appointments, delay treatment, and be hospitalized than their typically developing peers. Teenagers with epilepsy face unique challenges including seizures and medications which may worsen cognition and a high burden of comorbid mental health issues. The current study investigates the unique transition needs of adolescents with MID and epilepsy.
Methods: Baseline data on transition readiness was collected from 190 adolescents between the ages of 14 and 18 with epilepsy who were enrolled in an epilepsy transition clinic (168 with typical cognitive development and 22 with MID). Groups were compared using Welch’s test.
Results: Adolescents with MID had significantly less transition skills than adolescents with typical cognitive development (p=.002). Unlike the typically developing group, older adolescents with MID did not have more transition skills than the younger adolescents (p= .415). Further analyses revealed that the older adolescents with MID were less knowledgeable about their condition, less responsible for managing their condition, and less likely to advocate for themselves and their health compared to their typically developing peers.
Conclusions: Adolescents with MID are not independently developing the skills they need for a successful transition to adult care. This study shows that these vulnerable adolescents need greater support. In order to ensure success, more consideration needs to be given to developing specialized programs and material to address the unique needs of these adolescents.
Funding: CIHR funded grant: Evaluating the Effectiveness and Impact of a Long-Term Transition Clinic on Recently-Transitioned Adolescents with Epilepsy
Cormorbidity (Somatic and Psychiatric)