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Published on: December 18, 2016
Epilepsy treatment patterns among patients with tuberous sclerosis complex
Jinlin Song1, Elyse Swallow1, Qayyim Said2
1Analysis Group, Inc., 111 Huntington Ave, Floor 14, Boston, MA 02199, United States.
Insights
Tuberous sclerosis complex (TSC) patients with epilepsy often require multiple anti-epileptic drugs (AEDs) and surgeries. This highlights a significant treatment burden and the need for novel therapeutic strategies.
Area of Science:
- Neurology
- Genetics
- Pharmacology
Background:
- Tuberous sclerosis complex (TSC) is a rare genetic disorder.
- Epilepsy is a common comorbidity in TSC patients.
- Current real-world epilepsy treatment patterns in TSC are not well-defined.
Purpose of the Study:
- To categorize epilepsy treatment patterns in patients with TSC.
- To assess the utilization of anti-epileptic drugs (AEDs), surgeries, and dietary therapies.
- To identify treatment burdens in this patient population.
Main Methods:
- Retrospective analysis of 1110 patients with TSC and epilepsy.
- Data collected from the TSC Natural History Database (2006-2014).
- Assessment of demographics, AEDs, surgical interventions, and dietary therapies.
Main Results:
- 83.6% of TSC patients had epilepsy, with a median diagnosis age of 0.7 years.
- 92.3% received treatment, predominantly AEDs (99.5%).
- Over half used ≥3 AEDs, 25.3% had surgery, and 35.1% underwent repeat surgeries.
Conclusions:
- High rates of polytherapy and multiple surgeries suggest significant treatment challenges.
- There is a clear need for more effective therapies for epilepsy in TSC.
- Reducing the treatment burden is a critical goal for managing TSC-related epilepsy.
Introduction:
Tuberous sclerosis complex (TSC) is a rare congenital disorder often associated with epilepsy. However, real-world treatment patterns for epilepsy in patients with TSC are not yet well categorized.
Methods:
This study included patients with TSC and epilepsy from fifteen clinics in the United States and one in Belgium who were enrolled in the TSC Natural History Database (2006-2014). Patient demographics and epilepsy treatment patterns, including the use of anti-epileptic drugs (AEDs), epilepsy surgeries, and dietary therapies were assessed.
Results:
Of the 1328 patients with TSC in the database, 1110 (83.6%) were diagnosed with epilepsy. The median age of epilepsy diagnosis was 0.7 years. Of those who received treatment for epilepsy (92.3%), 99.5% were prescribed AEDs, 25.3% underwent surgery, 7.9% were prescribed special diets, and 1% were prescribed mammalian target of rapamycin (mTOR) inhibitors. Of the patients receiving AEDs, over half (64.5%) used ≥3 different AEDs, and 22.5% underwent surgical treatment following AED initiation. Of the patients who underwent surgery, 35.1% had subsequent surgery.
Conclusion:
The use of multiple AEDs and surgical interventions may indicate a need for new therapies to reduce the treatment burden among patients with TSC and epilepsy.
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