Abstracts

Rationale: Tuberous sclerosis complex (TSC) is the leading genetic cause of epilepsy and affects several organ systems.  Due to this multisystem involvement, there is a need to efficiently monitor and track patient throughput in the various subspecialty clinics to ensure appropriate surveillance with timely follow up and prompt interventions. Tracking this information longitudinally in the electronic medical record (EMR) offers an easily accessible format. We sought to modify and implement a tracking system based on a genetic cancer predisposition surveillance model to improve tracking, accessibility, and patient outcomes in our TSC population.
 _x000D_ The TSC Patient Registry is an outcomes-based dashboard in the EMR that focuses on the surveillance and multidisciplinary care associated with TSC. This hospital-based registry helps providers apply diagnostic criteria, track surveillance per guidelines, and manage recommendations. This makes coordination of care and interdisciplinary communication easy and thereby providing the tools to improve the quality of care for our medically and socially complex patients.

Methods: A TSC Complex Registry was created with the inclusion of demographic data, TSC clinical and/or genetic diagnosis and subspecialty care providers. Standard surveillance parameters included imaging (MRI brain and abdomen, Renal Ultrasound), cardiology (ECHO, EKG) and Neurophysiology (EEG). Dates of prior and upcoming appointments with various subspecialty clinics were also included.  Hospital admissions and Emergency department visits were tracked. A retrospective review of the data was performed to identify the effectiveness of this registry after 10 months of implementation. Compliance with clinic follow up, surveillance testing, emergency room utilization and hospitalization was reviewed and compared to the data prior to the launch of our registry.   

Results: A total of 73 patients (31 males [42%], 42 females [58%]) with clinically and/or genetically confirmed TSC were identified and included in TSC registry. The mean age was 8.98 years.  Clinical care coordination and follow up was reviewed over 10 months for each of these patients. Average TSC return clinic visits improved by 23 %, MRI/imaging compliance improved by 22%, and ophthalmology visits improved by 20%. A distinct benefit was the ease of scheduling of combined testing procedures under anesthesia (EUA).  In addition to this, emergency room visits decreased by 39% after implementation of our TSC registry.

Conclusions: Tuberous sclerosis complex is a multisystem disease needing longitudinal surveillance and follow up with different specialties. Implementing an easy EMR tool to track and monitor our patients’ surveillance needs and appointments in real time as part of our TSC registry improved care coordination and led to a significant improvement in compliance with subspecialty visits, surveillance imaging and reduced the emergency room visits significantly while improving interdisciplinary communication and quality of care for our complex patients.

Funding: None