International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND)

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dc.contributor.authorde Vries, Petrus J.
dc.contributor.authorHeunis, Tosca-Marie
dc.contributor.authorVanclooster, Stephanie
dc.contributor.authorChambers, Nola
dc.contributor.authorBissell, Stacey
dc.contributor.authorByars, Anna W.
dc.contributor.authorFlinn, Jennifer
dc.contributor.authorGipson, Tanjala T.
dc.contributor.authorvan Eeghen, Agnies M.
dc.contributor.authorWaltereit, Robert
dc.contributor.authorCapal, Jamie K.
dc.contributor.authorCukier, Sebastián
dc.contributor.authorDavis, Peter E.
dc.contributor.authorSmith, Catherine
dc.contributor.authorKingswood, J. C.
dc.contributor.authorSchoeters, Eva
dc.contributor.authorSrivastava, Shoba
dc.contributor.authorTakei, Megumi
dc.contributor.authorGardner-Lubbe, Sugnet
dc.contributor.authorKumm, Aubrey J.
dc.contributor.authorKrueger, Darcy A.
dc.contributor.authorSahin, Mustafa
dc.contributor.authorDe Waele, Liesbeth
dc.contributor.authorJansen, Anna C.
dc.date.accessioned2023-09-26T09:33:30Z
dc.date.available2023-09-26T09:33:30Z
dc.date.issued2023-09-14
dc.date.updated2023-09-17T03:09:38Z
dc.description.abstractBackground Tuberous sclerosis complex (TSC) is associated with a wide range of physical manifestations for which international clinical recommendations for diagnosis and management have been established. TSC is, however, also associated with a wide range of TSC-Associated Neuropsychiatric Disorders (TAND) that are typically under-identified and under-treated yet associated with a profound burden of disease. The contemporary evidence base for the identification and treatment of TAND is much more limited and, to date, consensus recommendations for the diagnosis and management of TAND have also been limited and non-specific. Methods The TANDem project was launched with an international, interdisciplinary, and participatory consortium of 24 individuals, including TSC family representatives, from all World Health Organization (WHO) regions but one. One of the aims of the TANDem project was to generate consensus recommendations for the identification and treatment of TAND. At the time of this project, no internationally adopted standard methodology and methodological checklists existed for the generation of clinical practice recommendations. We therefore developed our own systematic procedure for evidence review and consensus-building to generate evidence-informed consensus recommendations of relevance to the global TSC community. Results At the heart of the consensus recommendations are ten core principles surrounded by cluster-specific recommendations for each of the seven natural TAND clusters identified in the literature (autism-like, dysregulated behavior, eat/sleep, mood/anxiety, neuropsychological, overactive/impulsive, and scholastic) and a set of wraparound psychosocial cluster recommendations. The overarching recommendation is to “screen” for TAND at least annually, to “act” using appropriate next steps for evaluation and treatment, and to “repeat” the process to ensure early identification and early intervention with the most appropriate biological, psychological, and social evidence-informed approaches to support individuals with TSC and their families. Conclusions The consensus recommendations should provide a systematic framework to approach the identification and treatment of TAND for health, educational, social care teams and families who live with TSC. To ensure global dissemination and implementation of these recommendations, partnerships with the international TSC community will be important. One of these steps will include the generation of a “TAND toolkit” of “what to seek” and “what to do” when difficulties are identified in TAND clusters.
dc.identifier.apacitationde Vries, Petrus J., Heunis, T., Vanclooster, S., Chambers, N., Bissell, S., Byars, Anna W., ... Jansen, Anna C. (2023). International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). <i>Journal of Neurodevelopmental Disorders</i>, 15(1), 32. http://hdl.handle.net/11427/38843en_ZA
dc.identifier.chicagocitationde Vries, Petrus J., Tosca-Marie Heunis, Stephanie Vanclooster, Nola Chambers, Stacey Bissell, Anna W. Byars, Jennifer Flinn, et al "International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND)." <i>Journal of Neurodevelopmental Disorders</i> 15, 1. (2023): 32. http://hdl.handle.net/11427/38843en_ZA
dc.identifier.citationde Vries, Petrus J., Heunis, T., Vanclooster, S., Chambers, N., Bissell, S., Byars, Anna W., Flinn, J. & Gipson, Tanjala T. et al. 2023. International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). <i>Journal of Neurodevelopmental Disorders.</i> 15(1):32. http://hdl.handle.net/11427/38843en_ZA
dc.identifier.ris TY - Journal Article AU - de Vries, Petrus J. AU - Heunis, Tosca-Marie AU - Vanclooster, Stephanie AU - Chambers, Nola AU - Bissell, Stacey AU - Byars, Anna W. AU - Flinn, Jennifer AU - Gipson, Tanjala T. AU - van Eeghen, Agnies M. AU - Waltereit, Robert AU - Capal, Jamie K. AU - Cukier, Sebastián AU - Davis, Peter E. AU - Smith, Catherine AU - Kingswood, J. C. AU - Schoeters, Eva AU - Srivastava, Shoba AU - Takei, Megumi AU - Gardner-Lubbe, Sugnet AU - Kumm, Aubrey J. AU - Krueger, Darcy A. AU - Sahin, Mustafa AU - De Waele, Liesbeth AU - Jansen, Anna C. AB - Background Tuberous sclerosis complex (TSC) is associated with a wide range of physical manifestations for which international clinical recommendations for diagnosis and management have been established. TSC is, however, also associated with a wide range of TSC-Associated Neuropsychiatric Disorders (TAND) that are typically under-identified and under-treated yet associated with a profound burden of disease. The contemporary evidence base for the identification and treatment of TAND is much more limited and, to date, consensus recommendations for the diagnosis and management of TAND have also been limited and non-specific. Methods The TANDem project was launched with an international, interdisciplinary, and participatory consortium of 24 individuals, including TSC family representatives, from all World Health Organization (WHO) regions but one. One of the aims of the TANDem project was to generate consensus recommendations for the identification and treatment of TAND. At the time of this project, no internationally adopted standard methodology and methodological checklists existed for the generation of clinical practice recommendations. We therefore developed our own systematic procedure for evidence review and consensus-building to generate evidence-informed consensus recommendations of relevance to the global TSC community. Results At the heart of the consensus recommendations are ten core principles surrounded by cluster-specific recommendations for each of the seven natural TAND clusters identified in the literature (autism-like, dysregulated behavior, eat/sleep, mood/anxiety, neuropsychological, overactive/impulsive, and scholastic) and a set of wraparound psychosocial cluster recommendations. The overarching recommendation is to “screen” for TAND at least annually, to “act” using appropriate next steps for evaluation and treatment, and to “repeat” the process to ensure early identification and early intervention with the most appropriate biological, psychological, and social evidence-informed approaches to support individuals with TSC and their families. Conclusions The consensus recommendations should provide a systematic framework to approach the identification and treatment of TAND for health, educational, social care teams and families who live with TSC. To ensure global dissemination and implementation of these recommendations, partnerships with the international TSC community will be important. One of these steps will include the generation of a “TAND toolkit” of “what to seek” and “what to do” when difficulties are identified in TAND clusters. DA - 2023-09-14 DB - OpenUCT DP - University of Cape Town IS - 1 J1 - Journal of Neurodevelopmental Disorders KW - Tuberous sclerosis complex KW - TAND KW - Rare genetic disorders KW - Consensus recommendations KW - Neurodevelopmental disability KW - Mental health KW - Education LK - https://open.uct.ac.za PY - 2023 T1 - International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) TI - International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) UR - http://hdl.handle.net/11427/38843 ER - en_ZA
dc.identifier.urihttps://doi.org/10.1186/s11689-023-09500-1
dc.identifier.urihttp://hdl.handle.net/11427/38843
dc.identifier.vancouvercitationde Vries Petrus J, Heunis T, Vanclooster S, Chambers N, Bissell S, Byars Anna W, et al. International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). Journal of Neurodevelopmental Disorders. 2023;15(1):32. http://hdl.handle.net/11427/38843.en_ZA
dc.language.rfc3066en
dc.publisherBioMed Central
dc.publisher.departmentDivision of Child and Adolescent Psychiatry
dc.publisher.facultyHealth Sciences
dc.rights.holderBioMed Central Ltd., part of Springer Nature
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.sourceJournal of Neurodevelopmental Disorders
dc.source.journalissue1
dc.source.journalvolume15
dc.source.pagination32
dc.source.urihttps://jneurodevdisorders.biomedcentral.com/
dc.subjectTuberous sclerosis complex
dc.subjectTAND
dc.subjectRare genetic disorders
dc.subjectConsensus recommendations
dc.subjectNeurodevelopmental disability
dc.subjectMental health
dc.subjectEducation
dc.titleInternational consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND)
dc.typeJournal Article
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