Abstract Details

Title Characteristics and Burden of Subependymal Giant Cell Astrocytomas (SEGAs) in Patients with Tuberous Sclerosis Complex: Results of a Patient and Caregiver Survey

Topic Neuro-oncology

Presentation(s) P07 - (-)

Poster/Presentation
Number 016

Objective

Background BACKGROUND: Patients with tuberous sclerosis complex (TSC), a genetic disorder characterized by benign tumor growth in multiple organs, may experience tumor growth in the ventricular system known as subependymal giant cell astrocytomas (SEGAs). This analysis aims to assess the prevalence, presentation, and associated burden of SEGAs in patients with TSC in the United States (US).

Design/Methods DESIGN/METHODS: An Institutional Review Board-approved Web-based survey of US TSC patients and caregivers obtained information on prevalence of different TSC manifestations, their treatment and management, and the clinical and health-related quality of life (HRQL) burden on patients and caregivers.

Results RESULTS: Of 676 TSC survey respondents, 116 (17%) were patients diagnosed with SEGAs. Of TSC survey respondents reporting diagnosis of SEGAs, 38% were TSC patients and 62% were caregivers of TSC patients. Mean age of TSC-SEGA patients was 25.5 years (median: 23.5). The mean age at which SEGA patients were diagnosed with TSC was 21.2 years (median: 25.0). TSC-SEGA patients also experienced seizures (65%), skin lesions (72%), and subependymal nodules (SENs) (43%). Almost 47% of TSC-SEGA patients reported having brain surgery; 22% reported having brain surgery for SEGA. Patients with SEGAs were most often diagnosed with TSC by a neurologist (37%), pediatrician (9%) or dermatologist (8%). 42% of patients with SEGAs were admitted at least once to the hospital while 39% went to the ER at least once in the past year. The majority of TSC-SEGA patients (64%) live more than 100 miles from a TSC clinic with nearly half (49%) of TSC-SEGA patients receiving medical care at a TSC clinic.

Conclusions CONCLUSIONS: Survey data demonstrate that TSC-SEGA is associated with significant clinical burden.

Authors/Disclosures
David W. Dunn, MD PRESENTER	Dr. Dunn has nothing to disclose.
Aaron Ellenbogen, DO	Dr. Ellenbogen has received personal compensation in the range of $100,000-$499,999 for serving as a Consultant for allergan. Dr. Ellenbogen has received personal compensation in the range of $50,000-$99,999 for serving on a Speakers Bureau for allergan. Dr. Ellenbogen has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Teva. Dr. Ellenbogen has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Supernus. Dr. Ellenbogen has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for ipsen. Dr. Ellenbogen has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Acorda.
	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
Judith Prestifilippo, MD	No disclosure on file
	No disclosure on file
Michael D. Frost, MD (Minnesota Epilepsy Group, PA)	No disclosure on file
James W. Wheless, MD, FAAP, FACP, FAAN, FAES, FCNS, FAAN (UTHSC-Pediatric Neurology)	Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Jazz. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurelis. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Azurity. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biocodex. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving as a Consultant for LivaNova. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Stoke. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for LivaNova. Dr. Wheless has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Jazz. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for UCB. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for UCB. Dr. Wheless has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Neurelius.
	No disclosure on file

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