Rationale: Transition is a gradual process during which adolescents and young adults with epilepsy acquire disease-specific knowledge and self-management skills while within the family-centered pediatric care model. Published guidelines and existing programs recommend beginning transition activities between ages 10 and 14, however there is no evidence defining factors influencing patient perceptions of transition, or the ideal time to begin transition.
Methods: Questionnaires were sent to youth with epilepsy (ages 12 to 21) via electronic medical record prior to clinic visits. Patient and family perception of transition was evaluated using the following questions: _x000D_
1. Importance of Transfer: On a scale from 1 (not important) to 10 (very important), how important is it for you and your child to transfer to an adult neurology doctor when they are an adult?_x000D_
2. Transition and Transfer Preparedness: On a scale from 1 (not ready) to 10 (very ready), how ready do you feel to transition and transfer to an adult neurology doctor?_x000D_
3. Readiness for Transition Programming: On a scale from 1 (not important) to 10 (very important), how important is it to start getting ready to transfer to an adult neurology doctor?_x000D_
Patient demographics and epilepsy-specific features were assessed in comparison to transition questions.
Results: Data analysis of 928 patient surveys demonstrated that older patient age was significantly associated with increased scores in preparedness for transition and transfer (p< 0.001), and readiness for transition programming (p< 0.001) among patients who were less than 19 years old. Severe developmental delay was associated with lower readiness for transition education scores (p= 0.001 for patients < 19, p= 0.027 for patients > 19), and lower perceived importance of transfer (p=0.005) among those less than 19 years old. Stratifying transition question scores by patient age highlighted that transfer to an adult provider was more important to patients younger than 19 when compared to patients older than 19. At age 15 there was increase in reported preparedness for transition and transfer and readiness to begin the transition process.
Conclusions: Epilepsy patient and family perceptions of transition and transfer are influenced by patient age (younger or older than 19), and comorbid developmental delay. These findings are presumably interrelated and influenced by selection bias and individual patient characteristics, as patients remaining in pediatric neurology care after age 19 are more likely to have intractable epilepsy and/or be medically complex. Anticipated or encountered barriers to transfer may have shaped these responses. The upward shift in self-reported preparedness and readiness to begin transition learning at age 15 is a novel finding. Future investigation is planned to determine if these findings are indicative of an ideal period for the initiation of transition programming._x000D_
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References:_x000D_
1.
https://www.ncbi.nlm.nih.gov/pubmed/8951283._x000D_
2. Camfield PR, Camfield CS. Pediatr Neurol. 2014._x000D_
3. Camfield PR et al. Epilepsy Behav. 2019._x000D_
4. Lewis SA, Noyes J. BMC Pediatr. 2013._x000D_
5. Nabbout R et al. Epilepsy Behav. 2019._x000D_
6. Twanow JE, Maturu S, Khandker N. J Pediatr Epilepsy. 2020._x000D_
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Funding: Not applicable