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
N1 - Funding Information:
This work was supported by Novartis Pharmaceuticals Corporation.
Funding Information:
The authors would like to thank Jo Anne Nakagawa, the TS Alliance, the Pediatric Epilepsy Research Foundation, and all TSC clinics and patients participating in the TSC Natural History Database Consortium: Minnesota Epilepsy Group, P.A., St. Paul, MN; Texas Scottish Rite Hospital for Children, Dallas, TX; New York University School of Medicine, New York, NY; Massachusetts General Hospital, Boston, MA; Children's Research Institute, Washington, DC; The University of Chicago, Chicago, IL; UCSF Benioff Children's Hospital Oakland, Oakland, CA; University of California Los Angeles, Los Angeles, CA; The University of Texas Health Science Center at Houston, Houston, TX; University of Alabama at Birmingham, Birmingham, AL; University of Alabama at Birmingham, Birmingham, AL; Children's Hospital Colorado, Aurora, CO; Nicklaus Children's Hospital Miami, Miami, FL; Loma Linda University, Loma Linda, CA; UZ Brussels, Belgium; University of Pennsylvania, Philadelphia, PA; Boston Children's Hospital, Boston, MA; Cincinnati Children's Hospital Medical Center, Cincinnati, OH; Washington University St. Louis, St. Louis, MO. Medical writing assistance was provided by Shelley Batts, PhD, an employee of Analysis Group, Inc.
Publisher Copyright:
© 2018
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 Natural History Database
KW - Tuberous sclerosis complex
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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 -