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

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