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Towards an improved understanding of TSC-Associated Neuropsychiatric Disorders (TAND)

Loren Leclezio (Division of Child and Adolescent Psychiatry, Univeristy of Cape Town, Cape Town, South Africa)
Petrus de Vries (Division of Child and Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa)

Advances in Autism

ISSN: 2056-3868

Article publication date: 4 April 2016

184

Abstract

Purpose

Tuberous Sclerosis Complex (TSC) is associated with many learning, behavioural, neurodevelopmental and psychiatric difficulties. Over 90 per cent of those with TSC will have some of these concerns, yet typically no more than 20 per cent receive support and treatment. The purpose of this paper is to provide an overview of TSC-Associated Neuropsychiatric Disorders (TAND), explore barriers to identification and management of TAND, and propose possible next steps to improve assessment and treatment of TAND.

Design/methodology/approach

The paper combines a brief review of the multiple levels of TAND with a conceptual analysis of barriers and potential facilitators to assessment and intervention for TAND.

Findings

Results suggest that the perceived uniqueness of TAND leads to treatment paralysis for most healthcare professionals, thus explaining the assessment and treatment gap seen for TAND. This may in part be due to the multi-dimensionality of TAND, and in part due to lack of access to clear, useful and evidence-based resources for TAND.

Research limitations/implications

Identification of natural TAND clusters through machine-based learning and data reduction methodologies may yield a manageable number of natural groups of TSC-related neuropsychiatric problems, for which a basic “toolkit” of evidence-based interventions could be developed.

Practical implications

Families and clinicians will benefit from a toolkit of tried and tested resources and evidence-based information to guide further investigation and management of TAND.

Originality/value

Even though individuals will have unique TAND profiles, there may be key natural TAND clusters – combinations of behaviours across multi-dimensional levels – that will simplify and improve access to further evaluation, treatment and neuroscientific research.

Keywords

Citation

Leclezio, L. and de Vries, P. (2016), "Towards an improved understanding of TSC-Associated Neuropsychiatric Disorders (TAND)", Advances in Autism, Vol. 2 No. 2, pp. 76-83. https://doi.org/10.1108/AIA-12-2015-0025

Publisher

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Emerald Group Publishing Limited

Copyright © 2016, Emerald Group Publishing Limited

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