Development and Feasibility of the Self-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ).

Humans Self Report Checklist Feasibility Studies Tuberous Sclerosis / complications Consensus
Acceptability Feasibility Self-report Stakeholder engagement TAND TAND Checklist TSC-associated neuropsychiatric disorders Tuberous sclerosis complex

Journal

Pediatric neurology
ISSN: 1873-5150
Titre abrégé: Pediatr Neurol
Pays: United States
ID NLM: 8508183

Informations de publication

Date de publication:
10 2023
Historique:
received: 01 04 2023
revised: 02 07 2023
accepted: 03 07 2023
medline: 5 9 2023
pubmed: 21 8 2023
entrez: 20 8 2023
Statut: ppublish

Résumé

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.

Sections du résumé

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.

Identifiants

DOI: 10.1016/j.pediatrneurol.2023.07.001 PMID: 37598571
pubmed: 37598571
pii: S0887-8994(23)00209-6
doi: 10.1016/j.pediatrneurol.2023.07.001
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't Research Support, N.I.H., Extramural

Langues

eng

Sous-ensembles de citation

IM

Pagination

101-123

Subventions

Organisme : NINDS NIH HHS
ID : U54 NS092090
Pays : United States
Organisme : NCATS NIH HHS
ID : U2C TR002818
Pays : United States

Informations de copyright

Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.

Auteurs

Tosca-Marie Heunis (TM)

Department of Public Health, Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium.

Nola Chambers (N)

Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, Cape Town, South Africa.

Stephanie Vanclooster (S)

Department of Public Health, Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium.

Stacey Bissell (S)

School of Psychology, University of Birmingham, Birmingham, United Kingdom.

Anna W Byars (AW)

Division of Neurology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center/University of Cincinnati College of Medicine, Cincinnati, Ohio.

Jamie K Capal (JK)

Department of Neurology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.

Sebastián Cukier (S)

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.

Peter E Davis (PE)

Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts.

Magdalena C de Vries (MC)

Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, Cape Town, South Africa.

Liesbeth De Waele (L)

Department of Paediatric Neurology, University Hospitals Leuven, Leuven, Belgium; Department of Development and Regeneration, KU Leuven, Leuven, Belgium.

Jennifer Flinn (J)

TSC Canada, Mississauga, Ontario, Canada.

Sugnet Gardner-Lubbe (S)

Department of Statistics and Actuarial Sciences, Stellenbosch University, Stellenbosch, South Africa.

Tanjala Gipson (T)

Department of Pediatrics, University of Tennessee Health Sciences Center, Memphis, Tennessee; Le Bonheur Children's Hospital and Boling Center for Developmental Disabilities, Memphis, Tennessee.

J Christopher Kingswood (JC)

Department of Clinical Genetics, St George's University Hospitals, London, United Kingdom; Sussex Renal Unit, The Royal Sussex County Hospital, Brighton, United Kingdom.

Darcy A Krueger (DA)

TSC Clinic Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Division of Neurology, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.

Aubrey J Kumm (AJ)

Division of Child and Adolescent Psychiatry, Centre for Autism Research in Africa (CARA), University of Cape Town, Cape Town, South Africa.

Mustafa Sahin (M)

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.

Eva Schoeters (E)

Belgian TSC Association (be-TSC), Mortsel, Belgium; Tuberous Sclerosis International (TSCi), Mortsel, Belgium.

Catherine Smith (C)

TSC Alliance, Silver Spring, Maryland.

Shoba Srivastava (S)

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.

Megumi Takei (M)

Japanese Society of Tuberous Sclerosis Complex, Family Network, Tokyo, Japan.

Agnies M van Eeghen (AM)

Emma Children's Hospital, Amsterdam University Medical Center, Amsterdam, Netherlands; TAND Expert Centre, 's Heeren Loo, Hoofddorp, Netherlands.

Robert Waltereit (R)

Child and Adolescent Psychiatry, University Medical Center Göttingen, Göttingen, Germany; Child and Adolescent Psychiatry, LWL-Klinikum Marsberg, Marsberg, Germany.

Anna C Jansen (AC)

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.

Petrus J de Vries (PJ)

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.

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Classifications MeSH

questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Development and Feasibility of the Self-Report...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Autorapport › Development and Feasibility of the Self-Report...
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Qualité des soins de santé › Mécanismes d'évaluation des soins de santé › Liste de contrôle › Development and Feasibility of the Self-Report...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Caractéristiques des études épidémiologiques › Études de faisabilité › Development and Feasibility of the Self-Report...
questionsmedicales.fr › Malformations et maladies congénitales, héréditaires et néonatales › Maladies génétiques congénitales › Syndromes néoplasiques héréditaires › Complexe de la sclérose tubéreuse › Development and Feasibility of the Self-Report...
questionsmedicales.fr › Phénomènes psychologiques › Processus mentaux › Pensée (activité mentale) › Prise de décision › Consensus › Development and Feasibility of the Self-Report...