Abstract
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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 104-108 |
| Number of pages | 5 |
| Journal | Journal of the Neurological Sciences |
| Volume | 391 |
| DOIs | |
| State | Published - Aug 15 2018 |
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Keywords
- Anti-epileptic drugs
- Epilepsy
- Treatment patterns
- Tuberous sclerosis complex
- Tuberous Sclerosis Natural History Database
ASJC Scopus subject areas
- Neurology
- Clinical Neurology
Cite this
Epilepsy treatment patterns among patients with tuberous sclerosis complex. / Song, Jinlin; Swallow, Elyse; Said, Qayyim; Peeples, Miranda; Meiselbach, Mark; Signorovitch, James; Kohrman, Michael; Korf, Bruce; Krueger, Darcy; Wong, Michael; Sparagana, Steven.
In: Journal of the Neurological Sciences, Vol. 391, 15.08.2018, p. 104-108.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Epilepsy treatment patterns among patients with tuberous sclerosis complex
AU - Song, Jinlin
AU - Swallow, Elyse
AU - Said, Qayyim
AU - Peeples, Miranda
AU - Meiselbach, Mark
AU - Signorovitch, James
AU - Kohrman, Michael
AU - Korf, Bruce
AU - Krueger, Darcy
AU - Wong, Michael
AU - Sparagana, Steven
PY - 2018/8/15
Y1 - 2018/8/15
N2 - 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.
AB - 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.
KW - Anti-epileptic drugs
KW - Epilepsy
KW - Treatment patterns
KW - Tuberous sclerosis complex
KW - Tuberous Sclerosis Natural History Database
UR - http://www.scopus.com/inward/record.url?scp=85048722935&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85048722935&partnerID=8YFLogxK
U2 - 10.1016/j.jns.2018.06.011
DO - 10.1016/j.jns.2018.06.011
M3 - Article
C2 - 30103955
AN - SCOPUS:85048722935
VL - 391
SP - 104
EP - 108
JO - Journal of the Neurological Sciences
JF - Journal of the Neurological Sciences
SN - 0022-510X
ER -