Rationale:
From a patient care perspective, the value of having a dedicated Tuberous Sclerosis Complex (TSC) clinic is immense, though to date the financial contributions of sustaining a specialized clinic within an academic health center have not been measured. By streamlining care and ensuring close adherence to surveillance guidelines, having a TSC clinic not only improves patient outcomes but also has the potential to create a robust revenue stream for the hospital through increased use of its diagnostic and procedural resources.
Methods:
To determine the economic impact of implementing a TSC clinic, the SlicerDicer function within University of Rochester’s Epic EMR was utilized. The baseline period was considered the 18 months prior to TSC clinic implementation and the intervention period was the first 18 months after instituting a dedicated once-monthly TSC clinic. All patients with a diagnosis of TSC were included. During the baseline period, queries included all epileptologists caring for TSC patients. During the intervention period, those who were seen by one of the clinic’s core neurology providers were included. Data was sliced by Current Procedural Terminology (CPT) codes to calculate total RVUs and wRVUs billed through neurology. Immediate downstream neurology procedures were also included, including standard of care surveillance imaging and EEG utilization. Total RVUs were then converted to billable dollars using conversion factors, averaging 2021-2022 for the baseline period and 2023-2024 for the intervention period.
Results:
During the Academic Year (AY) prior to TSC clinic development (2021-2022), total RVUs billed through epilepsy were 268.5, with 6 new patient visits (NPV) and 40 follow up visits (FUV). After TSC clinic implementation (AY 2023-2024), total RVUs for neurology nearly tripled to 791.64, with an 11-fold increase in NPV (67) along with 44 FUV. Neurology wRVUs correspondingly also increased from 108.6 to 387.64. Total RVUs from imaging studies increased from 159.14 to 525.33. Total RVUs from EEG utilization increased from 77 to 203. The overall estimated increase in billing was $28,968 in the year following TSC clinic development.
Conclusions:
In the setting of shifting support across healthcare, it is important to articulate the value of a rare disease clinic to both patient care as well as financial bottom line. This study highlights that implementation of a dedicated TSC clinic improves access to neurologic care with a downstream increase in imaging and EEG utilization. The economic impact of this is notable, and serves as a baseline that is likely an underestimation of the true financial impact of the clinic as this study focused only on neurological healthcare delivery in TSC care. To follow up on these preliminary findings, we will assess the impact of TSC clinic development across subspecialty care.
Funding: No funding was received.