Development and feasibility of the self-report quantified TSC-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) (120 characters of 120 max)

Tosca-Marie Heunis; Nola Chambers; Stephanie Vanclooster; Stacey Bissell; Anna W. Byars; Jamie K. Capal; Sebastián Cukier; Peter E. Davis; Magdalena C. de Vries; Liesbeth De Waele; Jennifer Flinn; Sugnet Gardner-Lubbe; Tanjala Gipson; J. Christopher Kingswood; Darcy A. Krueger; Aubrey J. Kumm; Mustafa Sahin; Eva Schoeters; Catherine Smith; Shoba Srivastava; Megumi Takei; Agnies M. van Eeghen; Robert Waltereit; Anna C. Jansen; Petrus J. de Vries

doi:10.1016/j.pediatrneurol.2023.07.001

Development and feasibility of the self-report quantified TSC-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) (120 characters of 120 max)

Tosca-Marie Heunis, Nola Chambers, Stephanie Vanclooster, Stacey Bissell, Anna W. Byars, Jamie K. Capal, Sebastián Cukier, Peter E. Davis, Magdalena C. de Vries, Liesbeth De Waele, Jennifer Flinn, Sugnet Gardner-Lubbe, Tanjala Gipson, J. Christopher Kingswood, Darcy A. Krueger, Aubrey J. Kumm, Mustafa Sahin, Eva Schoeters, Catherine Smith, Shoba SrivastavaMegumi Takei, Agnies M. van Eeghen, Robert Waltereit, Anna C. Jansen, Petrus J. de Vries^*

^*Corresponding author for this work

Psychology

Research output: Contribution to journal › Article › peer-review

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Abstract

Introduction Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) are often present but under-identified and under-treated 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, in comparison to 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 TSC individuals and their caregivers. 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.

Original language	English
Journal	Pediatric Neurology
Early online date	7 Jul 2023
DOIs	https://doi.org/10.1016/j.pediatrneurol.2023.07.001
Publication status	E-pub ahead of print - 7 Jul 2023

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Heunis, T.-M., Chambers, N., Vanclooster, S., Bissell, S., Byars, A. W., Capal, J. K., Cukier, S., Davis, P. E., de Vries, M. C., De Waele, L., Flinn, J., Gardner-Lubbe, S., Gipson, T., Kingswood, J. C., Krueger, D. A., Kumm, A. J., Sahin, M., Schoeters, E., Smith, C., ... de Vries, P. J. (2023). Development and feasibility of the self-report quantified TSC-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) (120 characters of 120 max). Pediatric Neurology. Advance online publication. https://doi.org/10.1016/j.pediatrneurol.2023.07.001

@article{87c527307b5746c197f4269f541cedf7,

title = "Development and feasibility of the self-report quantified TSC-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) (120 characters of 120 max)",

abstract = "Introduction Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) are often present but under-identified and under-treated 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 {\textquoteleft}near-final{\textquoteright} 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, in comparison to the TAND-L, included four new items and a quantification rating. Phase 2 showed high ratings for the {\textquoteleft}near-final{\textquoteright} 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 TSC individuals and their caregivers. 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.",

author = "Tosca-Marie Heunis and Nola Chambers and Stephanie Vanclooster and Stacey Bissell and Byars, {Anna W.} and Capal, {Jamie K.} and Sebasti{\'a}n Cukier and Davis, {Peter E.} and {de Vries}, {Magdalena C.} and {De Waele}, Liesbeth and Jennifer Flinn and Sugnet Gardner-Lubbe and Tanjala Gipson and Kingswood, {J. Christopher} and Krueger, {Darcy A.} and Kumm, {Aubrey J.} and Mustafa Sahin and Eva Schoeters and Catherine Smith and Shoba Srivastava and Megumi Takei and {van Eeghen}, {Agnies M.} and Robert Waltereit and Jansen, {Anna C.} and {de Vries}, {Petrus J.}",

year = "2023",

month = jul,

day = "7",

doi = "10.1016/j.pediatrneurol.2023.07.001",

language = "English",

journal = "Pediatric Neurology",

issn = "0887-8994",

publisher = "Elsevier",

}

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 TSC-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) (120 characters of 120 max)', Pediatric Neurology. https://doi.org/10.1016/j.pediatrneurol.2023.07.001

TY - JOUR

T1 - Development and feasibility of the self-report quantified TSC-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) (120 characters of 120 max)

AU - Heunis, Tosca-Marie

AU - Chambers, Nola

AU - Vanclooster, Stephanie

AU - Bissell, Stacey

AU - Byars, Anna W.

AU - Capal, Jamie K.

AU - Cukier, Sebastián

AU - Davis, Peter E.

AU - de Vries, Magdalena C.

AU - De Waele, Liesbeth

AU - Flinn, Jennifer

AU - Gardner-Lubbe, Sugnet

AU - Gipson, Tanjala

AU - Kingswood, J. Christopher

AU - Krueger, Darcy A.

AU - Kumm, Aubrey J.

AU - Sahin, Mustafa

AU - Schoeters, Eva

AU - Smith, Catherine

AU - Srivastava, Shoba

AU - Takei, Megumi

AU - van Eeghen, Agnies M.

AU - Waltereit, Robert

AU - Jansen, Anna C.

AU - de Vries, Petrus J.

PY - 2023/7/7

Y1 - 2023/7/7

N2 - Introduction Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) are often present but under-identified and under-treated 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, in comparison to 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 TSC individuals and their caregivers. 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.

AB - Introduction Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) are often present but under-identified and under-treated 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, in comparison to 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 TSC individuals and their caregivers. 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.

U2 - 10.1016/j.pediatrneurol.2023.07.001

DO - 10.1016/j.pediatrneurol.2023.07.001

M3 - Article

SN - 0887-8994

JO - Pediatric Neurology

JF - Pediatric Neurology

ER -

Development and feasibility of the self-report quantified TSC-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) (120 characters of 120 max)

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