Infantile Spasms Clinic- referral Sources and Outcomes
Abstract number :
1.322
Submission category :
4. Clinical Epilepsy / 4B. Clinical Diagnosis
Year :
2024
Submission ID :
1118
Source :
www.aesnet.org
Presentation date :
12/7/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Candice Marti, MSN, CPNP – Boston Children's Hospital
Stephanie Donatelli, MD – Boston Children's Hospital
Christina Briscoe Abath, MD, EdM – Boston Children's Hospital
Seema Adhami, MD – UMASS Memorial Hospital
Nishtha Gupta, MD – Boston Children's Hospital
Madeline Chiujdea, BA CPHQ – Boston Children's Hospital
Jeffrey Bolton, MD – Boston Children's Hospital
Chellamani Harini, MD – Boston Children's Hospital, Harvard Medical School
Rationale: Diagnostic challenges are common in infantile epileptic spasms syndrome (IESS). To address the challenges, the BCH IESS program was restructured to provide timely outpatient evaluation of suspected IESS patients in 2022 in addition to longitudinal care for patients with confirmed IESS. The clinic is structured to accommodate urgent referrals, similar to the first seizure clinic. We describe the initial results of these efforts to decrease lead time to diagnosis and provide standardized follow-up.
Methods: Retrospective study of infants with suspected or confirmed IESS from June 2022- May 2024. Referral source, timing for evaluation and description of events, were extracted from the medical record.
Results: Eighty-two infants were seen in IESS clinic, with 40 children with confirmed IESS (49%) and 42 with a negative evaluation (51%), including clinical assessment and EEG with sleep. Clustering of events (p< 0.0001,chi-square) and prior neurodevelopmental diagnoses (p< 0.0001, chi-square) were highly associated with IESS. Home videos were available to initial providers in 55% confirmed and 50% of the negative cases. Additional characteristics noted in Table 1.
All children with IESS (n=40) were referred to clinic by the inpatient service after confirmed diagnosis. These patients had either presented to the emergency room (ER) (90%) or had direct hospital admission (10%). Referral source for these patients prior to their IESS diagnosis came from: parents (55%), other clinicians (27.5%), primary care provider (12.5%), and daycare provider (2.5%). Lead time to evaluation was 7 days (IQR 2,14) in confirmed cases. These patients were reassessed with follow-up EEG in the IESS clinic at 14 days (IQR12,16) following treatment initiation.
Of the 42 patients (51%) with a negative evaluation for IESS (n=42), referral sources included primary care provider (68%) and parents (32%). Among negative cases, 41 cases were seen in our clinic and 1 patient was seen in ER prior to clinic visit. For the negative cases, assessment (EEG/clinical visit) occurred at 5 days (IQR 2,8) from referral.
Conclusions: Nearly half of the patients seen in our clinic had negative evaluation for IESS. There were many overlapping symptoms between confirmed and negative cases. Historical elements (clustering, delays) were helpful when present but cannot be solely relied upon to rule-out IESS. Referral sources for the negative cases came from community (primary care providers, caregivers), while confirmed IESS cases were referred exclusively from inpatient unit. This is not surprising, as ER was the entry point for initial evaluation in 90% of IESS cases. This suggests an opportunity to improve our triaging process. In negative cases, we provided expedited access to care and reassurance for caregivers as well as subspecialty expertise and support for community primary care providers. Our enhanced post discharge follow-up care of confirmed cases met standard of care.
Funding: None
Clinical Epilepsy