Abstracts

Rationale: Many youths with epilepsy (YWE) and other chronic health conditions require ongoing long-term care for active disease or comorbidities as they transition from the pediatric to the adult health care setting.  Understanding how sociodemographic, comorbid and system-related factors may impact such transition is important for developing effective transition models of care. Methods: We analyzed data from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample with parent respondents of youth ages 12-17 with special health care needs (any medical, behavioral or other health condition that has lasted or is expected to last 12 months or more). Multivariable logistic regression models were used to assess whether sociodemographic, physical medical, psychological, developmental comorbidities, in addition to having a medical home and number of specialty care providers was associated with transition preparation care gaps for youth with special need (YSN) overall and for YWE. Results: For YSN (N=15,682), we found that ages 15-17 years (vs. ages 12-14), male gender (vs. female), Black or Hispanic race/ethnicity (vs. white), Spanish speaking (vs. Non-Hispanic/English), 100-399% federal poverty level (FPL; versus =400%), public or no insurance (vs. private), not having a medical home (vs. having a home), having =2 specialty care providers (vs. having <2 providers), having a psychological comorbidity (ADHD, depression, anxiety or behavior conduct; vs. none), having a developmental comorbidity (cerebral palsy, intellectual or developmental disability, Down’s syndrome or Autism: vs. none) were significantly associated with having transitional preparation gaps (all p’s <0.03); having a physical medical condition (asthma, allergies, heart condition, arthritis, cystic fibrosis, diabetes, blood conditions, headache, muscular dystrophy or traumatic brain injury; vs. none), epilepsy and parental education were not significant. For YWE (N=474), having no medical home (vs. having a home) and having developmental comorbidity (vs. none) was significantly associated with transitional preparation gaps, while having a psychological comorbidity (vs. none) was associated with having less transitional preparation gaps (all p’s <0.002); sociodemographic factors were not associated with transitional preparation gaps for YWE. Conclusions: The absence of a medical home is an important factor associated with transitional preparation gaps for YSN overall and YWE. Having epilepsy or physical medical conditions is not associated with transition preparation care gaps for YSN, although developmental and psychological comorbidities were. While sociodemographic factors and having more specialty care doctors are associated with gaps for YSN overall, they were not associated with such gaps for with YWE. Why psychological comorbidity is positively associated with transition preparation for YWE warrants further examination. Funding: American Epilepsy Society/Epilepsy Foundation