Abstracts

Rationale: Supporting the transition to adult care for adolescents and young adults with epilepsy is complex; patients and clinicians often have limited face-to-face patient time to assess and address their individual needs. To develop a broad, transition-related educational program that could be delivered outside of the office visit, providers within an epilepsy program within an urban children’s hospital did a retrospective analysis of patient and caregiver TRAQ responses to identify common knowledge gaps. This analysis also aimed to identify whether knowledge disparities existed between demographic groups.

Methods: Starting in January 2019, the TRAQ was distributed to patients (or their proxy) via an EMR-based patient portal prior to routine office visits. The TRAQ is a validated, self-completed tool that assesses patient readiness in five domains: medication management, appointment keeping, tracking health issues, talking with providers, and managing activities of daily living (ADLs). Patients eligible to complete the TRAQ had 1) an ICD-10 based epilepsy diagnosis, 2) were ≥ 14yo, and 3) seen by pediatric neurologists involved in this study. TRAQ results were uploaded into the patient’s EMR once completed. Surveys were distributed annually and collected through April 2021.

Results: 110 complete surveys were collected. Most common demographics were: female, 50% (n=55); age 14-17, 80% (n=88); non-Hispanic white, 52% (n=57). Caregivers completed 74% (n=81) of surveys on behalf of patients (Table 1). Aggregated mean scores indicated that patients were generally in the learning phase of two transition domains: tracking health issues and appointment keeping and have been actively engaging in the remaining domains: medication management, managing ADLs, and talking with providers. There were modest differences in means between demographic sub-cohorts. As patients aged, domain scores generally increased, with patients over 22 reporting engagement in all transition-related activities (Table 1).

Conclusions: Given the variability in transition readiness, patients may benefit from a module-based educational program that can be tailored to their individual TRAQ responses (didactic and skill practice/reinforcement sessions). Modules could be self-directed or group-based. Having a well-developed educational program may facilitate more in-clinic discussions as it will offer providers concrete resources to which patients can referred.

Funding: Please list any funding that was received in support of this abstract.: This work was funded by an award from the Health Resources and Services Administration (HRSA): 19-060.