Development and Feasibility of the Self-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ).
Journal: Pediatric neurology
Volume: 147
Issue:
Year of Publication: 2023
Affiliated Institutions:
Department of Public Health, Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium.
Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, Cape Town, South Africa.
School of Psychology, University of Birmingham, Birmingham, United Kingdom.
Division of Neurology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center/University of Cincinnati College of Medicine, Cincinnati, Ohio.
Department of Neurology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Argentine Program for Children, Adolescents and Adults With Autism Spectrum Disorders (PANAACEA), Buenos Aires, Argentina; Department of Psychopathology and Mental Health, Pedro de Elizalde Hospital, Buenos Aires, Argentina.
Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts.
Department of Paediatric Neurology, University Hospitals Leuven, Leuven, Belgium; Department of Development and Regeneration, KU Leuven, Leuven, Belgium.
TSC Canada, Mississauga, Ontario, Canada.
Department of Statistics and Actuarial Sciences, Stellenbosch University, Stellenbosch, South Africa.
Department of Pediatrics, University of Tennessee Health Sciences Center, Memphis, Tennessee; Le Bonheur Children's Hospital and Boling Center for Developmental Disabilities, Memphis, Tennessee.
Department of Clinical Genetics, St George's University Hospitals, London, United Kingdom; Sussex Renal Unit, The Royal Sussex County Hospital, Brighton, United Kingdom.
TSC Clinic Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Division of Neurology, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.
Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts; Rosamund Stone Zander Translational Neuroscience Center, Boston Children's Hospital, Boston, Massachusetts.
Belgian TSC Association (be-TSC), Mortsel, Belgium; Tuberous Sclerosis International (TSCi), Mortsel, Belgium.
TSC Alliance, Silver Spring, Maryland.
Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, Cape Town, South Africa; Society of Parents of Children with Autistic Disorders (SOPAN), Maharashtra, India.
Japanese Society of Tuberous Sclerosis Complex, Family Network, Tokyo, Japan.
Emma Children's Hospital, Amsterdam University Medical Center, Amsterdam, Netherlands; TAND Expert Centre, 's Heeren Loo, Hoofddorp, Netherlands.
Child and Adolescent Psychiatry, University Medical Center Göttingen, Göttingen, Germany; Child and Adolescent Psychiatry, LWL-Klinikum Marsberg, Marsberg, Germany.
Department of Public Health, Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium; Pediatric Neurology Unit, Department of Pediatrics, Antwerp University Hospital, Antwerp, Belgium; Department of Translational Neurosciences, University of Antwerp, Antwerp, Belgium.
Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, Cape Town, South Africa. Electronic address: petrus.devries@uct.ac.za.
Abstract summary
Tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) are often present but underidentified and undertreated in individuals with tuberous sclerosis complex (TSC). The clinician-completed TAND-Lifetime Checklist (TAND-L) was developed to address this identification and treatment gap. Stakeholder engagement identified the need for a TAND Checklist that can (1) be completed by caregivers or individuals with TSC and (2) quantify TAND difficulties. The aim of this study was to develop a self-report quantified TAND Checklist (TAND-SQ) and conduct feasibility and acceptability testing.This aim was addressed in three phases: (1) development of the TAND-SQ Checklist, (2) feasibility and acceptability testing of the "near-final" TAND-SQ Checklist, and (3) preparation of the final TAND-SQ Checklist. Participants included 23 technical experts from the TAND consortium in all phases and 58 lived experts (caregivers and individuals with TSC) in phase 2. All participants completed a TAND-SQ Checklist and a checklist feedback form.Phase 1 additions to the TAND-SQ, when compared with the TAND-L, included four new items and a quantification rating. Phase 2 showed high ratings for the "near-final" TAND-SQ Checklist on comprehensiveness, clarity, ease of use, and overall acceptability. In phase 3, questions on strengths, strategies, and a TAND Cluster Profile were added.The TAND-SQ Checklist is presented here for use by individuals with TSC and their caregivers. The next steps as part of the TANDem project include internal and external validation of the checklist and linking of TAND Cluster Profiles generated from the checklist to evidence-informed consensus recommendations within a smartphone application.
Authors & Co-authors:
Heunis Tosca-Marie TM
Chambers Nola N
Vanclooster Stephanie S
Bissell Stacey S
Byars Anna W AW
Capal Jamie K JK
Cukier Sebastián S
Davis Peter E PE
de Vries Magdalena C MC
De Waele Liesbeth L
Flinn Jennifer J
Gardner-Lubbe Sugnet S
Gipson Tanjala T
Kingswood J Christopher JC
Krueger Darcy A DA
Kumm Aubrey J AJ
Sahin Mustafa M
Schoeters Eva E
Smith Catherine C
Srivastava Shoba S
Takei Megumi M
van Eeghen Agnies M AM
Waltereit Robert R
Jansen Anna C AC
de Vries Petrus J PJ
Study Outcome
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