Rationale:
Children who continue to have seizures after two antiepileptic medications at maximal therapeutic doses are diagnosed with refractory epilepsy and an inpatient epilepsy surgery evaluation should be considered. At our hospital, this refractory epilepsy evaluation (REE) includes LTM, PET scan, and MRI, and possibly a SPECT scan and fMRI. The goal of testing is to collect comprehensive data to determine if the child is a candidate for epilepsy surgery and if so, which surgical procedure is recommended. Notably, individuals with neurodevelopmental disabilities have higher rates of epilepsy compared to peers (Heller et al., 1996). Studies have shown that 20-33% of individuals with autism spectrum disorder (ASD) develop epilepsy. Children with ASD and refractory epilepsy can benefit from epilepsy surgery (Morrison-Levy et al., 2018). However, the needs of children with ASD can present unique challenges to procedures during an epilepsy surgery evaluation (Kokozka et al., 2017).
Children with ASD and a high level of problem behavior may experience delayed referral to REE due to concern about their ability to tolerate the admission. However, given the importance of the REE to epilepsy care, we created a multidisciplinary intervention program to prepare children and their families for admission, help providers feel more comfortable when referring patients with ASD to REE, and provide support and planning to inpatient providers during admission. The multidisciplinary team included psychologists, epileptologists, EEG technicians, child life specialists, social work, nurse practitioners, and nurses.
Method:
Interviews about challenges for children with ASD during REE were conducted with parents, as well as inpatient and outpatient providers (Wojnaroski et al, 2019). Using this information, interventions were created and trialed with a small number of patients. Eventually, a three tiered approach was created.
After a child was referred to REE, a referral was also placed to the Autism Support program. The family was called by the psychologist to complete a semi-structured interview, focused on the patient’s past EEG experience, communication, developmental level, preferences, and anticipated problems. Based on parent/caregiver responses, the child was assigned to Tier 1, 2, or 3, representing the level of support that would be provided to the child and family. Psychologists completed the preparation sessions and were available for direct intervention or consultation as needed during the patient’s admission.
Results:
Since the program launched in January 2020, eleven patients have been referred to the Psychology Support program. All families agreed to participate. Seven patients were assigned to Tier 1, one to Tier 2, and three patients to Tier 3. Five patients have completed their admission, and 100% completed all necessary medical procedures and were able to stay for the required duration of the LTM.
EMU admissions were paused during COVID-19, leading to a pause in the program, but the EMU re-opened in May 2020. During the remainder of 2020, patients will again be referred to the program. Further analysis will include data regarding completion of REE, medical interventions, and outcomes, as well as post admission interviews with families about their experience.
Conclusion:
Children with autism and refractory epilepsy should be referred for REE; however there are often concerns about their ability to tolerate an extended LTM and required medical procedures. In our experience, children with autism and their families benefit from preparation prior to the admission, which helps them complete the admission, allowing the medical team to gather seizure data, and possibly recommend a new intervention to improve epilepsy.
Funding:
:None
FIGURES
Figure 1