Abstracts

Rationale: The transition from pediatric to adult healthcare is fraught with difficulty, especially for patients with complex neurologic needs (Camfield et al, Epilepsy Curr 12, 13–21, 2012). Adult neurologists may feel less confident managing patients with childhood-onset epilepsy, particularly genetic epilepsies or those associated with cognitive delay (Oskoui et al, Can J Neurol Sci 39, 202–205, 2012). We identified a subset of adolescents with complex, often treatment-resistant epilepsy at a single pediatric center, and performed a cross-sectional survey of their caregivers to assess transitions readiness and identify demographic factors which may impact the transition process.

Methods: Eligible patients were identified by review of all outpatient pediatric epilepsy clinic schedules at our center between July 2020 and June 2021. Patients 12 and older with the following clinical variables were included: Lennox Gastaut syndrome, Dravet syndrome, PCDH19, SCN2A, SCN8A, KCNQ2, post-surgical patients, VNS or RNS, and ketogenic diet. These patients were then asked to complete a nine-question electronic survey, with a phone interpreter present if needed. The survey used a sliding scale between 0-100 to assess caregiver confidence in the transition process and epilepsy management, and a yes/no question asking if families felt their child would need more decision-making support.

Results: 116 eligible caregivers completed the survey; 96 caregivers (82.8%) anticipated their child would need more medical decision-making support. Caregivers reported an average confidence level of 52% that a new neurologist would understand their child’s diagnosis in adulthood, and 53% that they had a plan for their child’s epilepsy care after the age of 18.

Linear regressions demonstrated the following significant relationships: Non-English-speaking parents scored on average 13.5 points lower (p=0.022) for confidence in managing their child's seizure emergencies and 17 points lower (p=0.045) for confidence in a plan for their child's insurance after they turn 18. Parents of children with LGS also scored 9.4 points lower (p=0.025) for managing their child's seizure emergencies.

Parents of post-surgical patients scored 19.7 points higher (p=0.02) for confidence in a new provider understanding their child's diagnosis and 13.4 points higher (p=0.037) for confidence in a plan for insurance after their child turns 18. As our post-surgical patients tended to have better seizure control, this may reflect higher levels of caregiver confidence in long-term management when epilepsy is more well-controlled.

Conclusions: Among our population of adolescents with complex epilepsy diagnoses, many of whom had cognitive disabilities, caregiver comfort with the transitions process was largely neutral, and may be substantially optimized moving forward. Non-English-speaking caregivers reported significantly lower confidence scores in managing their children’s seizure emergencies and insurance, suggesting that further interventions are likely needed to support their understanding of care in these areas.

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