Abstracts

Rationale: The childhood onset of intractable epilepsy is often a lifelong condition, thus children must learn to assume responsibility for their own care as they approach adulthood. The purpose of this abstract is to study the developmental and cognitive attributes that contribute to this ability to assume responsibility for their epilepsy care as adults. Methods: A social worker obtained a psychosocial assessment (PA) in a convenience sample of adolescents with intractable epilepsy seen in our outpatient clinic (5/20/08 -8/30/09). The PA combined HEADSSS screening and anticipatory guidance commonly used in Primary Care with self or parent reported transition-specific knowledge, attitudes, and skills. Information was provided by patients, parents, and medical records. Results: 30 adolescents were included (16 male, 14 female; 15 Caucasian, 5 African American, 8 Hispanic, & 2 Other). The median age was 15.5y, range 11-23y; 15 < 16 years of age (younger) and 15 > 16 years of age (older). Cognition was assessed as within normal (7), mild to moderate impairment (18), and severe impairment (5). In older patients, cognition was assessed as within normal (3), mild to moderate impairment (10) and severe impairment (2). 23 had special education services in school. Medical knowledge was based upon the 25 youths who were cognitively able to participate in their care. 17 had a developmentally appropriate understanding of their medical condition for their cognitive level. (9 of 12 younger, 8 of 13 older). 12 knew all of the names of their medications (6 of 12 younger, 6 of 13 older). 18 knew the purpose of their medications, (8 of 12 younger, 10 of 13 older). 5 (all older) had independently met with a medical provider (physician or nurse practitioner) in the last year. 10 acknowledged not adhering to their medication regimen as prescribed in the last year. 16 expressed an interest in intimate relationships, although only 3 acknowledged being sexually active (1 younger, 2 older). 6 acknowledged alcohol use (1 younger, 5 older) and 3 acknowledged drug use (3 older). In the previous 3 years, mental health disorders affected 15 out of 25. Of those 15 patients, 11 had internalizing disorders and 9 had externalizing disorders (5 had both types of disorders). Conclusions: These data illustrate the types of preparedness issues faced by adolescents with epilepsy as they approach the time when they will assume responsibility for their care. In summary, medical knowledge did not seem to increase with age and a larger than anticipated number of patients had interest in intimate relationships, drug/alcohol use and mental health needs. Awareness of these issues should help enable providers to screen for medical knowledge, mental health and risk taking behaviors. Ultimately we envision the development and implementation of programs to assist youth with epilepsy as they transition to adult care.