Behavioural, Psychiatric, Intellectual, Academic/Learning, Neuropsychological and Psychosocial challenges
- TAND stands for TSC Associated Neuropsychiatric Disorders
- TAND includes (among other things) behaviour, intellectual disability, autism, learning difficulties and mental ill health
- The TAND checklist should be used annually to support screening for TAND
- More comprehensive assessment should be done at each developmental stage
- Management of TAND includes medicine and non-medicine based approaches
The impacts of TSC (Tuberous Sclerosis Complex) on behaviour, learning and mental health are often the most difficult symptoms of TSC for families to cope with. It is important that families, carers, educators and health professionals are aware of these challenges; look for them in the TSC affected person at regular intervals; and implement appropriate strategies to deal with them.
The term TAND has been coined for these challenges. It stands for TSC-associated neuropsychiatric disorders. Other terms that can be used for these difficulties include ‘neurocognitive issues’, ‘neurobehavioural difficulties’, ‘learning issues’, ‘mental ill health’, ‘neuropsychiatric disorders’, ‘neurodevelopmental difficulties’ and ‘cognitive and behavioural difficulties’. We know there can be stigma associated with some of these terms, however most often there are no alternative words to use. For this reason we have chosen to use the terms used by doctors and researchers in this area of TSC.
This Information page is divided into the following sections:
- Signs and Symptoms that make up TAND
- Screening and Assessment for TAND
- Management of TAND
As with all TSA information pages, this information is not intended to, and it should not, constitute medical or other advice. Readers are warned not to take any action without first seeking medical advice. The best way to use this information is to bring it with you to your next appointment with your health professional.
Signs, Symptoms and
Signs and Symptoms
The aim of understanding the different areas where a person with TSC may have difficulties is to identify the areas of strength and difficulties in each individual. This is done through regular screening and then assessment and testing. After these strengths and difficulties are identified the team of professionals can work with the family to work out what additional help may be needed to help the individual achieve their potential.
Different families will have different priorities and goals. Intervention should be individualised to meet the needs of both the person with TSC and their family.
It is important to remember that not every individual with TSC will have difficulties with every aspect of TAND. A diagnosis of Tuberous Sclerosis does mean that the individual is at an increased risk of difficulties in these areas at some point in their lifetime.
TAND can be understood by considering different levels or dimensions. These levels have been suggested by the Neuropsychiatry Panel at the 2012 International Consensus Conference. The levels are: behavioural; psychiatric; intellectual; academic; neuropsychological; and psychosocial.
Screening and Assessment for TAND
Screening and Assessment is important because it can lead to early detection and treatment. Each person with TSC should have an individual management plan developed with their medical team that uses the 2021 International surveillance and management guidelines as a starting point.
In September 2023, the TAND Consortium published consensus recommendations for the identification and treatment of Tuberous Sclerosis Complex-associated Neuropsychiatric Disorders (TAND). You can access the publication here.
Understanding the behavioural, psychiatric, intellectual, academic, neuropsychological and psychosocial challenges experienced by someone with TSC is especially important because there is so much variation between different individuals with TSC. TAND may also arise later in life after many years of apparently 'normal' functioning. By understanding the individual’s strengths and difficulties, the best treatment options can be determined.
Management of TAND
Based on the results of individual assessment, an individual management plan should be developed. This plan should be developed in consultation with everyone on “the team”: the individual with TSC and their family along with the health and education professionals involved in their care.
This section describes some of the main options for managing TAND challenges in individuals with TSC. For many of the challenges experienced by a person with TSC the options for management are the same as in a person without TSC.
Last updated: 13 July 2022
Reviewed by: Dr Vanessa Sarkozy, Developmental Paediatrician, Sydney Children’s Hospital Network, Australia and Dr Vinita Prasad, Developmental and Behavioural Paediatrician, Queensland Children’s Hospital, Brisbane
- de Vries, P.J., et al., Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist. Pediatr Neurol, 2015. 52(1): p. 25-35.
- Leclezio, L., et al., Pilot validation of the tuberous sclerosis-associated neuropsychiatric disorders (TAND) checklist. Pediatr Neurol, 2015. 52(1): p. 16-24.
- Kwiatkowski D.J., Whittemore V.H. & Thiele E.A. (2010) Tuberous Sclerosis Complex: Genes, Clinical Features, and Therapeutics. Weinheim: Wiley-Blackwell
- Guidelines For The Assessment Of Cognitive And Behavioral Issues In TSC, Tuberous Sclerosis Alliance, viewed 10 May 2012, https://tsalliance.org/pages.aspx?content=589
- Attention Deficit Hyperactivity Disorder And Tuberous Sclerosis Complex , Tuberous Sclerosis Alliance, viewed 10 May 2012, https://tsalliance.org/pages.aspx?content=582
- TSC and Autism Spectrum Disorders, Tuberous Sclerosis Alliance, viewed 10 May 2012, https://tsalliance.org/pages.aspx?content=604
- Specchio et al., Autism and Epilepsy in Patients With Tuberous Sclerosis Complex- a systematic review article 11 August 2020