The burden of subependymal giant cell astrocytomas associated with tuberous sclerosis complex: results of a patient and caregiver survey
| Autor: | M. Frost, Anne M. Rentz, JoAnne Nakagawa, Anne Skalicky, Matthew Magestro, David W. Dunn, Corey L. Pelletier, Chris Pashos, James W. Wheless, Zhimei Liu, Judith Prestifilippo |
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| Rok vydání: | 2014 |
| Předmět: |
Adult
Pathology medicine.medical_specialty Adolescent Ventricular system Astrocytoma Benign tumor Tuberous sclerosis Young Adult Cost of Illness Tuberous Sclerosis medicine Subependymal zone Humans Child Health related quality of life Internet business.industry Brain Neoplasms Genetic disorder Infant Middle Aged Patient Acceptance of Health Care medicine.disease Cross-Sectional Studies Caregivers Giant cell Child Preschool Pediatrics Perinatology and Child Health Quality of Life Neurology (clinical) business |
| Zdroj: | Journal of child neurology. 30(5) |
| ISSN: | 1708-8283 |
| Popis: | Tuberous sclerosis complex is a genetic disorder characterized by benign tumor growth including lesions in the ventricular system of the brain known as subependymal giant cell astrocytomas. This analysis focuses on the clinical presentation, management, and associated burden of subependymal giant cell astrocytomas in patients with tuberous sclerosis complex in the United States. An institutional review board–approved web-based survey of tuberous sclerosis complex patients and caregivers collected information, and descriptive analyses were conducted on age-based subgroups. A total of 116 tuberous sclerosis complex–subependymal giant cell astrocytoma patients or caregivers responded (17% of the total tuberous sclerosis complex sample). Mean and median patient ages were 25.5 and 23.5 years. Besides subependymal giant cell astrocytomas, patients also experienced skin lesions (72%), seizures (65%), and cognitive concerns (60%). Forty-five percent reported having brain surgery (22% for subependymal giant cell astrocytoma). In the past year, 42% of patients were admitted at least once to the hospital whereas 39% went to the emergency department. Results demonstrate that tuberous sclerosis complex–subependymal giant cell astrocytoma is associated with significant clinical burden, resource utilization, and decreased well-being. |
| Databáze: | OpenAIRE |
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