Author ORCID Identifier
https://orcid.org/0000-0003-0842-357X
Date of Graduation
5-2018
Document Type
Thesis (MS)
Program Affiliation
Genetic Counseling
Degree Name
Masters of Science (MS)
Advisor/Committee Chair
Hope Northrup, MD, FACMG
Committee Member
Myla Ashfaq, MS, CGC
Committee Member
Laura Farach, MD
Committee Member
Deborah Pearson, PhD
Committee Member
Steve Roberds, PhD
Committee Member
Syed Hashmi, MD, MPH, PhD
Abstract
Tuberous sclerosis complex (TSC) is a multi-system, neurocutaneous disorder with neuropsychiatric features known as TSC-associated neuropsychiatric disorders (TAND). While 90% of individuals with TSC have some TAND features, only 20% receive treatment, leading to a 70% treatment gap. This study evaluated perception of disease severity, presence of anxiety and depression, as well as the utilization and barriers towards mental health services among adults with TSC. Disease severity had a moderate and low-moderate association with anxiety and depression, respectively. Regardless of past utilization, respondents had a positive outlook towards the use of mental health services with the major barrier being cost.
Keywords
Tuberous Sclerosis Complex, TSC, TSC-Associated Neuropsychiatric Disorders, TAND, Mental Health, Attitudinal Barriers, Structural Barriers
Included in
Congenital, Hereditary, and Neonatal Diseases and Abnormalities Commons, Genetics Commons, Psychiatric and Mental Health Commons