Abstracts

Rationale: Transition from pediatric to adult health care systems proves difficult for many youths with epilepsy and their families. The American Epilepsy Society recommends beginning transition discussions between 10 and 13 years of age. However, it has been reported that only 31% of youth with epilepsy receive a transition discussion prior to the age of 18.


Methods: We conducted a secondary qualitative analysis of a cohort study of patients aged 18 years and older, diagnosed with epilepsy. Data was collected from 12/1/21 to 5/3/22 at a tertiary pediatric hospital in Dayton, Ohio. Two surveys, the Health-Related Social Needs Screening Tool (HRSN) and a self-created Barriers to Transition (B2T) survey, were distributed to patients or their primary caregiver to complete on behalf of the patient. 31 surveys were completed (13 by the patient and 18 by the caregiver). Our aim was to understand the social needs of the patients and their perspectives on transitioning to adult neurological care.


Results: The majority of the patients were male (51.6%), with a mean age of 22.1 years. Most were White/Caucasian (74.2%), not Hispanic/Latino (90.3%), and with Medicaid or private insurance (both 41.9%). The majority reported having 3 or more social needs (48.4%); the most common being lack of physical activity (83.9%), presence of disabilities (51.6%), and mental health needs (45.2%). The B2T survey revealed 35.5% of respondents did not have a transition of care discussion with the clinical team. Only 5 (16.1%) patients attempted to transition to adult care with 3 being successful. The most common reason for not attempting to transition is the desire to remain at the current pediatric facility (58.1%). 48.2% were not satisfied with the current transition process. Ways to improve the process included: having the adult neurology office contact the patient for a new appointment (35.5%) and having the pediatric office follow-up on the outcome of the transition (32.3%). Using grounded theory approach, five themes emerged from the free-response text on barriers to transitioning to adult care, these included: Lack of a formal transition process, fear/worry, consistency of specialized pediatric care, insurance and perspectives of adult care (figure 1). One facilitator to transitioning sub-theme emerged: treatment plan approach.

Conclusions: At a single pediatric hospital, patients aged 18 years and older and their caregivers reported having 3 or more social needs, and expressed reasonings inhibiting transition to adult neurological care as feeling fear/worry of transitioning, lack of guidance/formal process at the pediatric center, insurance issues, wanting to remain at the specialized pediatric center and views of adult care as ‘not as specialized’ or without the knowledge sufficient to care for adults with special needs. Current findings can help with designing neurology transition programs to meet the needs of this complex population.

Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.