Abstracts

Rationale: Epilepsy is a complex disease and seizures are only a part of this condition. Transition from pediatric to adult healthcare system proves difficult for many adolescents with epilepsy and their families. The psychosocial outcomes of adult patients with pediatric-onset epilepsy can be poor. The challenges increase further when patients have rare genetic etiologies, sometimes accompanied by intellectual and developmental disabilities. This makes them difficult to transition given the lack of accommodation and knowledge gaps that may exist between the two systems. The main goal was to understand the perception of patients with epilepsy and their families who were in the process of, had already undergone, or were preparing to transition.

Methods: A survey was distributed to patients/caregivers of patients with epilepsy in North America. Patients were required to be 12 years or older at the time of the survey. Participants were divided into two age groups: younger than 18 and 18 or older. Major components of the survey included details regarding their demographics, epilepsy details, quality and access to care received during pediatric and adult years, and questions regarding transition and readiness for both younger and older participants.

Results: Responses were received from 58 patients/caregivers of patients with epilepsy out of which 55% of the participants were never spoken to or prepared for the transition process. Forty-five percent of the participants were 18 years or older. Twenty-seven percent of the participants had reported the cause of epilepsy as Dravet Syndrome, 26% genetic or chromosomal changes, and for 26%, the cause was unknown. Interestingly, 34% of the participants 18 years or older still visit their family doctor for epilepsy related treatment instead of an adult neurologist.

Participants also reported a decrease in access to specialty care during their adult years (Fig 1). A small number of patients felt that their experience was less adequate in adult system when it came to time spent during visits, help being readily available, trusting the doctor, and feeling understood by the doctor when compared to their pediatric years. Patients felt lack of autonomy in their care in the pediatric years (Fig 2).

In the group of patients 18 years or older, 27% had not transitioned yet. Fifteen percent felt that during the transition process they did not have clear instructions or felt accompanied, and the adult physician/care institution’s name they were being transferred to was not known.

Conclusions: The results of this patient survey highlight the need for earlier conversations and preparedness around transition from child to adult care before patients leave the pediatric system. It further signifies the importance of a multidisciplinary team involved in the process and the need for advocacy around the continuity in access to specialty care as the patient transitions to adult system. Lastly, this study highlights the need for patient empowerment through development of a ‘Transition toolkit’. Such a toolkit would help the patients and families be prepared when the time comes and go through the transition phase smoothly even in places without a formal transition program.

Funding: Please list any funding that was received in support of this abstract.: None.