Pediatric to Adult Transition Care Gaps for Youth with Epilepsy with Comorbid Intellectual or Developmental Disability

Objective: To measure receipt of transitional care (adult to pediatric) services for youth with epilepsy, including those with comorbid intellectual and/or developmental disability, compared to youth without epilepsy. Background: Many youth with epilepsy (YWE), including those with intellectual and/or developmental disability (ID/DD), continue to have active seizures, require chronic anti-seizure medications or have comorbidity requiring ongoing adult epilepsy care. Design/Methods: We analyzed data for the 2009–2010 National Survey of Children with Special Health Care Needs, a nationally representative sample with 17114 parent respondents of youth ages 12–17 with special health care needs (any medical, behavioral or other health condition ≥12 months). We compared receipt of transitional care services for youth with current epilepsy (YWE) or “epilepsy plus” (YWEP; epilepsy with ID/DD) compared to youth without epilepsy (YWOE). Sample weights reflect population totals. Results: 519 (3.1%; weighted mean age 14.4 years) YWE, 275 (1.7%; 14.4 years) YWEP and 16570 (96.8%; 14.5 years) YWOE were examined. No differences were identified in age, gender, race/ethnicity, education and metropolitan residence between YWE/YWEP compared to YWOE. YWE and YWEP were more likely to have public insurance versus private compared to YWOE (p Conclusions: While over two-thirds of YWE have transitional care gaps (did not receive care), such transition gaps are most profound for YWEP. Disclosure: Dr. Baca has nothing to disclose. Dr. Barry has nothing to disclose. Dr. Kuo has nothing to disclose. Dr Drees has nothing to disclose. Dr. Knupp has nothing to disclose.