Abstracts

Rationale:
Epilepsy is the fourth most common neurological disorder and affects people of all ages; however, at least 40% of children will have seizures into adulthood 1. Children with epilepsy experience neurologic and extra-neurologic changes that can negatively impact self- management skills necessary for optimal adult function. Transition from pediatric care into adult care is a multi-step process that can benefit from the use of electronic medical record (EMR). The National Alliance to Advance Adolescent Health lists six core elements of healthcare transition (GotTransition.org. Got Transition® - Health Care Providers. GotTransition.org. https://gottransition.org/providers/index.cfm.) These core elements include: (1) developing a transition policy, (2) monitoring and tracking transition, (3) assessing transition readiness, (4) transition planning, (5) transfer of care, and (6) transfer completion.   Those with intellectual disability (ID) face additional barriers to a smooth transition into adult care. Improving the medical transition process for all CYE is vital. At our institution, we utilize multiple programs within our EMR to identify patients with and without ID so that we can ensure a smooth transition when they are ready to transfer to adult care. 
Method:
We utilized our EMR to facilitate the process of transitioning pediatric epilepsy patients seen at our institution to adult care. The TRAQ, which assesses individual metrics for adequate self-management that have been validated for patients with special healthcare needs (Sawicki, GS et al. “Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—transition readiness assessment questionnaire.” Journal of Pediatric Psychology. Pp. 1-12, 2009).    The TRAQ is a validated tool consisting of 20 questions that has been used to better understand which pediatric patients were able to transition. It measures two domains: self-management and self-advocacy. This tool is automatically distributed via a “Best Practice Advisory” (BPA) to patients annually starting at 14 years of age. BPAs are commonly-used pop-up alerts in the EMR for a variety of systems-wide metrics, including improving quality. It also provides links to the TRAQ, social work consults, release of information, and patient-facing transition-related educational material. It is being piloted for two of our pediatric epileptologists.
Results:
TRAQ was utilized for 34 distinct patients 14-23 years old in the pilot (6/1/2019-5/31/2020). 6 were found to have ID, and 28 were not (Table 1).
Conclusion:
Without TRAQ, our transition process would not readily distinguish between pediatric patients who have epilepsy and ID, from those without ID. By administering the TRAQ longitudinally, we can see how transition readiness varies with ID and age. While it is likely that this would present itself at some point in the transition process, early screening and identification is essential. Early identification also allows for targeted interventions to be developed longitudinally for patients with intellectual disability. TRAQ delivered via BPA may be helpful to identify patients with mild ID, who may have otherwise gone unrecognized. In the future, as more patients are identified, the team can intervene earlier with more EMR resources to facilitate transition, and additional tools can be developed that have a more large-scale impact (e.g. podcasts, etc).
Funding:
:Partially funded by U.S. Department of Health and Human Services Health Resources and Services Administration Grant No. H98MC33238.