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

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.

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.

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.

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.

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.

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.