Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND Checklist

Tuberous sclerosis complex is a multisystem genetic disorder with a range of physical manifestations that require evaluation, surveillance, and management. Individuals with tuberous sclerosis complex also have a range of behavioral, psychiatric, intellectual, academic, neuropsychologic, and psychoso...

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Published in:Pediatric neurology Vol. 52; no. 1; pp. 25 - 35
Main Authors: de Vries, Petrus J., Whittemore, Vicky H., Leclezio, Loren, Byars, Anna W., Dunn, David, Ess, Kevin C., Hook, Dena, King, Bryan H., Sahin, Mustafa, Jansen, Anna
Format: Journal Article
Language:English
Published: United States Elsevier Inc 01.01.2015
Subjects:
Adolescent
Adult
autism
behavior
Brain Diseases - complications
Brain Diseases - diagnosis
Brain Diseases - physiopathology
Brain Diseases - psychology
Checklist
Child
Child, Preschool
Humans
Infant
learning disorders
Mental Disorders - complications
Mental Disorders - diagnosis
Mental Disorders - physiopathology
Mental Disorders - psychology
mental health
neurocognition
Neurology
neuropsychological
Pediatrics
Pilot Projects
psychiatric disorders
psycho-social
Terminology as Topic
Tuberous Sclerosis - complications
Tuberous Sclerosis - diagnosis
Tuberous Sclerosis - physiopathology
Tuberous Sclerosis - psychology
neurocognition
mental health
psycho-social
behavior
autism
neuropsychological
psychiatric disorders
learning disorders
ISSN:0887-8994, 1873-5150, 1873-5150
Online Access:Get full text
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Summary:Tuberous sclerosis complex is a multisystem genetic disorder with a range of physical manifestations that require evaluation, surveillance, and management. Individuals with tuberous sclerosis complex also have a range of behavioral, psychiatric, intellectual, academic, neuropsychologic, and psychosocial difficulties. These may represent the greatest burden of the disease. Around 90% of individuals with tuberous sclerosis complex will have some of these difficulties during their lifetime, yet only about 20% ever receive evaluation and treatment. The Neuropsychiatry Panel at the 2012 Tuberous Sclerosis Complex International Consensus Conference expressed concern about the significant “treatment gap” and about confusion regarding terminology relating to the biopsychosocial difficulties associated with tuberous sclerosis complex. The Tuberous Sclerosis Complex Neuropsychiatry Panel coined the term TAND—tuberous sclerosis complex-associated neuropsychiatric disorders—to bring together these multidimensional manifestations of the disorder, and recommended annual screening for TAND. In addition, the Panel agreed to develop a TAND Checklist as a guide for screening. Here, we present an outline of the conceptualization of TAND, rationale for the structure of the TAND Checklist, and include the full US English version of the TAND Checklist. We hope that the unified term TAND and the TAND Checklist will raise awareness of the importance of tuberous sclerosis complex-associated neuropsychiatric disorders and of the major burden of disease associated with it, provide a shared language and a simple tool to describe and evaluate the different levels of TAND, alert clinical teams and families or individuals of the importance of screening, assessment, and treatment of TAND, and provide a shared framework for future studies of tuberous sclerosis complex-associated neuropsychiatric disorders.
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We dedicate the TAND Checklist to the memory of Ann Hunt (1939–2014), who pioneered the systematic study of TAND in the 1980s and 1990s.
ISSN:0887-8994
1873-5150
1873-5150
DOI:10.1016/j.pediatrneurol.2014.10.004