Abstracts

Rationale: Adolescents and young adults (AYA) with epilepsy often have unaddressed health care needs. During this period, AYA are expected to transition from pediatric to adult care, and this transfer can lead to healthcare disengagement. The American Epilepsy Society (AES) provides suggested timeframes in their Transition Practice Tool for certain transition-related activities (e.g., attending appointment with provider alone, discussing transition plan, etc.) based on previous transition research. The purpose of this study is to examine engagement of AYA in transition tasks accordance with AES guidelines and to determine if any demographic or clinical factors are associated with engagement.

Methods: A survey was administered to 82 AYA with epilepsy (Mage = 17.30 years, 86.59% white non-Hispanic, 46.34% male) that inquired about specific transition-related conversations with providers, if they had received a written transition plan from their clinician, and when they thought they would transition to adult care. For eight of the survey questions (Table 1), a total transition score (range of 0 to 8) was derived, where higher scores indicated more transition planning had occurred. Correlations and t-tests were used to determine differences in transition tasks between AYA of different demographic and clinical factors.

Results: Transition scores ranged from 0 to 8 (M = 2.41, SD = 2.03). See details in Table 1. A moderate positive correlation (r = 0.51) existed between age and transition score, reflecting older participants completed more transition tasks with clinicians compared to younger participants. A weak positive relationship (r = 0.12) existed between time since diagnosis and transition score. When asked when they would transition to adult healthcare, 23.17% indicated they did not know and 10.98 % gave vague answers such as “when I have to” or, “in the future.” No significant differences in transition score were found among factors including sex, race, diagnosis of anxiety or depression, or between individuals on monotherapy vs. polytherapy.

Conclusions: Most of the transition activities included in this survey are recommended by AES to begin at age 16. Less than a third (n = 24) of our sample was below age 16. Thus, many participants were not planning for transition to adult care in accordance with AES guidelines. More research is needed to develop interventions for transition planning for AYA with epilepsy to promote successful transfer to adult healthcare and positive long-term health outcomes. 

Funding: This work was supported by the Endowed Scholars Award through Cincinnati Children’s Hospital Medical Center awarded to Avani C. Modi.