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

Autor: de Vries PJ; Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, 46 Sawkins Road, Rondebosch, Cape Town, 7700, South Africa. petrus.devries@uct.ac.za., Heunis TM; Mental Health and Wellbeing Research Group, Department of Public Health, Vrije Universiteit Brussel, Brussels, Belgium., Vanclooster S; Mental Health and Wellbeing Research Group, Department of Public Health, Vrije Universiteit Brussel, Brussels, Belgium., Chambers N; Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, 46 Sawkins Road, Rondebosch, Cape Town, 7700, South Africa., Bissell S; School of Psychology, University of Birmingham, Birmingham, UK., Byars AW; TSC Clinic Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.; Division of Neurology, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA., Flinn J; TSC Canada, Mississauga, ON, Canada., Gipson TT; Department of Pediatrics, University of Tennessee Health Sciences Center, Memphis, TN, USA.; Le Bonheur Children's Hospital and Boling Center for Developmental Disabilities, Memphis, TN, USA., van Eeghen AM; Emma Children's Hospital, Amsterdam University Medical Center, Amsterdam, Netherlands.; TAND Expert Centre, 'S Heeren Loo, Hoofddorp, Netherlands., Waltereit R; Child and Adolescent Psychiatry, University Medical Center Göttingen, Göttingen, Germany., Capal JK; Department of Neurology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA., Cukier S; Department of Psychopathology and Mental Health, Pedro de Elizalde Hospital, Buenos Aires, Argentina., Davis PE; Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA., Smith C; TSC Alliance, Silver Spring, MD, USA., Kingswood JC; Department of Clinical Genetics, St George's University Hospitals, London, UK.; Sussex Renal Unit, The Royal Sussex County Hospital, Brighton, UK., Schoeters E; Be-TSC, Mortsel, Belgium.; TSCi, Mortsel, Belgium., Srivastava S; Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, 46 Sawkins Road, Rondebosch, Cape Town, 7700, South Africa.; Society of Parents of Children With Autistic Disorders (SOPAN), Mumbai, India., Takei M; Japanese Society of Tuberous Sclerosis Complex, Family Network, Tokyo, Japan., Gardner-Lubbe S; MuViSU (Centre for Multi-Dimensional Data Visualisation), Department of Statistics and Actuarial Sciences, Stellenbosch University, Stellenbosch, South Africa., Kumm AJ; Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, 46 Sawkins Road, Rondebosch, Cape Town, 7700, South Africa., Krueger DA; TSC Clinic Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.; Division of Neurology, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA., Sahin M; Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.; Rosamund Stone Zander Translational Neuroscience Center, Boston Children's Hospital, Boston, MA, USA., De Waele L; Department of Paediatric Neurology, University Hospitals Leuven, Louvain, Belgium.; Department of Development and Regeneration, KU Leuven, Louvain, Belgium., Jansen AC; Mental Health and Wellbeing Research Group, Department of Public Health, Vrije Universiteit Brussel, Brussels, Belgium.; Department of Pediatrics, Koningin Mathilde Moeder-en Kindcentrum, Antwerp University Hospital, Antwerp, Belgium.; Department of Translational Neurosciences, University of Antwerp, Antwerp, Belgium.
Jazyk: angličtina
Zdroj: Journal of neurodevelopmental disorders [J Neurodev Disord] 2023 Sep 14; Vol. 15 (1), pp. 32. Date of Electronic Publication: 2023 Sep 14.
DOI: 10.1186/s11689-023-09500-1
Abstrakt: 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.
(© 2023. BioMed Central Ltd., part of Springer Nature.)
Databáze: MEDLINE
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