Abstracts

Rationale: High rates of intellectual disability, autism spectrum disorder, and other cognitive impairments exist in pediatric epilepsy populations.  Young adults with epilepsy have complex medical needs that requires strict medical adherence.   For epilepsy patients with significant cognitive impairment, the need for legal protection to assist with medical decisions is critical and may include legal guardianship.  Epilepsy programs treating cognitively impaired children into adulthood need to account for this, as unresolved guardianship may present a significant barrier to care.  Our center assists families petitioning for guardianship, with neuropsychological assessment, family education, and case-management by social work.  Our center does not provide legal assistance or legal advice about guardianship.  We report on a retrospective review of our involvement with patients and their caregivers that pursued guardianship. Methods: We reviewed the medical record system and department database for patients that pursued guardianship and where our center provided assistance between the years 2012-2018  This review focused on demographics, assessment strategy, and broad developmental status.  Data was also reviewed related to where assessment was conducted, and what type of legal guardianship was obtained.  The following cognitive and adaptive measures were used in assessments: WISC-IV & V, WAIS-IV, TONI-4, SIB-R, Vineland 2 & 3, and ABAS-2 & 3. Results: This review yielded 47 patients that pursued guardianship with our center’s involvement.  64% were assessed by our center’s neuropsychology team, the remaining either by community or school-based psychologists. The group was 68 % male, with a mean age of epilepsy onset of 3.95 years (SD 4.02.)  Intellectual disability or significant developmental delay was observed in 87% of patients, autism diagnosed in 15%, and 19% had a dual ID/ASD diagnosis.  The mean FSIQ score for the cohort was 52 (SD 13.78) and mean adaptive score was 36 (SD 18.05.) Conclusions: Multi-disciplinary epilepsy centers with neuropsychology and social work may be uniquely positioned to assist families with guardianship and other necessary transition tasks.  Outside collaterals including state agencies and schools may also be valuable supports in the guardianship process.  Legal consultation may be necessary to craft specific plans based on individual need. This review was important to our program, as it prompted education of the team about the importance of identifying at-risk patients early in the process that may be in need of guardianship to provide consent, assist in decision making, and to mitigate barriers to care.   Limitations: our international patient population also has high rates of ASD/ID, however this population does not typically pursue guardianship as specific laws regarding guardianship or equivalent vary widely by country - and they are typically receiving care in US on a temporary basis. Funding: None