Heunis, T-M;
Chambers, N;
Vanclooster, S;
Bissell, S;
Byars, AW;
Capal, JK;
Cukier, S;
Davis, PE;
de Vries, MC;
De Waele, L;
et al.
Heunis, T-M; Chambers, N; Vanclooster, S; Bissell, S; Byars, AW; Capal, JK; Cukier, S; Davis, PE; de Vries, MC; De Waele, L; Flinn, J; Gardner-Lubbe, S; Gipson, T; Kingswood, JC; Krueger, DA; Kumm, AJ; Sahin, M; Schoeters, E; Smith, C; Srivastava, S; Takei, M; van Eeghen, AM; Waltereit, R; Jansen, AC; de Vries, PJ
(2023)
Development and Feasibility of the Self-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ).
Pediatr Neurol, 147.
pp. 101-123.
ISSN 1873-5150
https://doi.org/10.1016/j.pediatrneurol.2023.07.001
SGUL Authors: Kingswood, John Christopher
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Abstract
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Item Type: | Article | |||||||||||||||
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Additional Information: | © 2023 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). | |||||||||||||||
Keywords: | Acceptability, Feasibility, Self-report, Stakeholder engagement, TAND, TAND Checklist, TSC-associated neuropsychiatric disorders, Tuberous sclerosis complex, Humans, Self Report, Checklist, Feasibility Studies, Tuberous Sclerosis, Consensus, Humans, Tuberous Sclerosis, Feasibility Studies, Consensus, Checklist, Self Report, Acceptability, Feasibility, Self-report, Stakeholder engagement, TAND, TAND Checklist, TSC-associated neuropsychiatric disorders, Tuberous sclerosis complex, 1109 Neurosciences, 1114 Paediatrics and Reproductive Medicine, Neurology & Neurosurgery | |||||||||||||||
SGUL Research Institute / Research Centre: | Academic Structure > Molecular and Clinical Sciences Research Institute (MCS) | |||||||||||||||
Journal or Publication Title: | Pediatr Neurol | |||||||||||||||
ISSN: | 1873-5150 | |||||||||||||||
Language: | eng | |||||||||||||||
Publisher License: | Creative Commons: Attribution-Noncommercial-No Derivative Works 4.0 | |||||||||||||||
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PubMed ID: | 37598571 | |||||||||||||||
Web of Science ID: | WOS:001068844300001 | |||||||||||||||
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URI: | https://openaccess.sgul.ac.uk/id/eprint/115884 | |||||||||||||||
Publisher's version: | https://doi.org/10.1016/j.pediatrneurol.2023.07.001 |
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