Abstracts

Rationale: Assessing transition readiness can demonstrate deficiencies in self-management among children and youth with Epilepsy (CYE) as they transition to an adult system of health care. Validated tools, such as the Transition Readiness Assessment Questionnaire (TRAQ), do not address epilepsy-specific needs. Correlation of an epilepsy-specific readiness tool with key clinical features (seizure type, intractability) may identify especially vulnerable CYE subpopulations and identify specific knowledge gaps to direct interventions. Our objective was to assess epilepsy-specific aspects of transition readiness among CYE using an adapted transition readiness assessment tool. Methods: Epilepsy-specific questions (knowledge of rescue medications, tracking seizure frequency, epilepsy type, impact on school/work/activities, and reproductive health) were added to the TRAQ and designated as the Transition Readiness Assessment Questionnaire for Epilepsy (Epi-TRAQ).  The original TRAQ responses were maintained (1= no I do not know how; 2=no but I want to learn; 3=no but I am learning to do this; 4=yes I have started doing this; 5=yes I always do this when I need to). Epi-TRAQ forms were given to patients with epilepsy age 16-26 years, or their parents, at the pediatric and adult neurology clinics at Michigan Medicine during Oct-Dec 2017. A medical record review was performed to identify patients’ epilepsy characteristics including type and intractability. This project was deemed exempt from IRB review. Results: Of 116 Epi-TRAQ forms completed, 40% were by patients and 60% by parents. 50% were female. Epilepsy type was 36% generalized, 51% focal, 9% combined generalized and focal, and 4% unknown. 42% of patients had intractable epilepsy. Regarding rescue medication use, more parents than patients assessed themselves at level 5 (55% vs 24%, p=.001);  A similar pattern was seen for patients with focal epilepsy (61% parents vs 23% patients, p<.004) and generalized epilepsy (56% parents  vs 24% patients, p<.077), as well as those with intractable epilepsy (65% parents vs 32% patients, p=.021)   In contrast, a lower proportion of non-intractable patients rated themselves at level 5 (42% parents vs 20% patients, p=.066). Regarding knowledge of the effect of seizures on pregnancy, more parents than patients assessed themselves at Level 5 (57% vs 26%, p=.018). Regarding knowledge of how seizure medications and birth control medications affect one another differences were smaller, with 40% of parents and 28% of patients assessing themselves at level 5 (p=.317). Conclusions: Among CYE, there was a deficiency in understanding of rescue medications and reproductive health. Parents rated themselves as more capable, though more than one third were not self-sufficient with rescue medications or knowledgeable of reproductive health topics. Furthermore, among those with focal and intractable epilepsies, there was a significant difference between patient and parent understanding of rescue medications. Interventions directed toward patient and parent understanding of rescue medications and reproductive health may improve transition readiness. Funding: Funded by HRSA grant H98MC30374.