Healthcare Utilization Among RTT Patients With Aspiration and Epilepsy in a Center of Excellence Medical Center in the United States

OBJECTIVES: To describe the healthcare utilization (HCU) burden of aspiration and epilepsy among RTT patients being cared by a center of excellence in the United States.

METHODS: Two separate retrospective observational studies were conducted using data from Vanderbilt University Medical Center electronic health record (EHR) focused on aspiration and epilepsy. Structured data (diagnoses, procedures, encounters) and unstructured data (clinical progress/physician notes) were used to establish symptom burden and related HCU. Each study compared HCU rates (outpatient [OP], emergency department [ED], and inpatient admissions [IP]) between RTT individuals with the specific comorbidity (aspiration or epilepsy) versus RTT individuals without the specific comorbidity. RTT individuals were required to have 12 months pre/post index and were age matched for the analyses.

RESULTS: A total of 89 RTT individuals were identified for the aspiration study where 25/89 (28%) had aspiration event. Of the 25 RTT with aspiration event, 20 RTT individuals had 12 months of pre/post index data. HCU for aspiration cases versus non-aspiration cases were the following: ≥1 OP visits (90% vs 90%), ≥1 ED visits (15% vs 20%), and ≥1 IP admissions (75% vs 35%), respectfully. A total of 98 RTT individuals were identified for the epilepsy study where 71 (86%) RTT individuals had epilepsy and 29/71(41%) had 12 months pre/post index data. During the 12 months after epilepsy diagnosis, RTT individuals were 2x more likely (7% vs 14%) to have ≥1 ED visit (p<0.05) and 3x more likely (7% vs 21%) to have ≥1 IP admissions (p<0.05) relative to the 12 months prior to epilepsy diagnosis.

CONCLUSIONS: RTT is a rare and complex condition associated with a high prevalence of aspiration, epilepsy, and other comorbid conditions. Aspiration and epilepsy have high rates of inpatient utilization. Caring for an individual with RTT can pose substantial economic and emotional burden for families.