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.
","abstract_html":"<p>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.</p>","abstract_has_math":false,"creators":["Mowrey, Kate","https://orcid.org/0000-0003-0842-357X
"],"institution":null,"degree_name":"Masters of Science (MS)","degree_level":"Thesis (MS)","degree_discipline":null,"degree_department":null,"school":null,"contributors":["Hope Northrup, MD, FACMG","Myla Ashfaq, MS, CGC","Laura Farach, MD"],"advisors":[],"committee_chairs":[],"committee_members":[],"year":2018,"date_issued":"2018-05-01T07:00:00Z","date_published":"2018-05-01T07:00:00Z","updated_at":"2026-07-24T05:49:16Z","subjects":["Tuberous Sclerosis Complex","TSC","TSC-Associated Neuropsychiatric Disorders","TAND","Mental Health","Attitudinal Barriers","Structural Barriers","Congenital, Hereditary, and Neonatal Diseases and Abnormalities","Genetics","Medicine and Health Sciences","Mental and Social Health","Psychiatric and Mental Health"],"languages":[],"rights":[],"rights_urls":[],"identifier_entries":[]},"links":{"outbound_url":"https://digitalcommons.library.tmc.edu/utgsbs_dissertations/847","outbound_label":"Repository record","outbound_source":"dc:identifier"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor","label":"Contributor","values":["Hope Northrup, MD, FACMG","Myla Ashfaq, MS, CGC","Laura Farach, MD"]},{"key":"dc:creator","label":"Author","values":["Mowrey, Kate","https://orcid.org/0000-0003-0842-357X
"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.available","label":"Dc Date Available","values":["2019-05-02T07:00:00Z"]},{"key":"thesis:degree_level","label":"Degree Level","values":["Thesis (MS)"]},{"key":"thesis:degree_name","label":"Degree Name","values":["Masters of Science (MS)"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["Tuberous Sclerosis Complex","TSC","TSC-Associated Neuropsychiatric Disorders","TAND","Mental Health","Attitudinal Barriers","Structural Barriers","Congenital, Hereditary, and Neonatal Diseases and Abnormalities","Genetics","Medicine and Health Sciences","Mental and Social Health","Psychiatric and Mental Health"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier","label":"Identifier","values":["https://digitalcommons.library.tmc.edu/utgsbs_dissertations/847"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["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.
"]},{"key":"dc:title","label":"Title","values":["Psychiatric Impact of Tuberous Sclerosis Complex and Utilization of Mental Health Treatment"]}]}],"canonical_facts":{"dc:contributor":["Hope Northrup, MD, FACMG","Myla Ashfaq, MS, CGC","Laura Farach, MD"],"dc:creator":["Mowrey, Kate","https://orcid.org/0000-0003-0842-357X
"],"dc:date.available":["2019-05-02T07:00:00Z"],"dc:description.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.
"],"dc:identifier":["https://digitalcommons.library.tmc.edu/utgsbs_dissertations/847"],"dc:subject":["Tuberous Sclerosis Complex","TSC","TSC-Associated Neuropsychiatric Disorders","TAND","Mental Health","Attitudinal Barriers","Structural Barriers","Congenital, Hereditary, and Neonatal Diseases and Abnormalities","Genetics","Medicine and Health Sciences","Mental and Social Health","Psychiatric and Mental Health"],"dc:title":["Psychiatric Impact of Tuberous Sclerosis Complex and Utilization of Mental Health Treatment"],"thesis:degree_level":["Thesis (MS)"],"thesis:degree_name":["Masters of Science (MS)"]},"updated_at":"2026-07-24T05:49:16Z"}