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Dublin Core
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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<a href="http://doi.org/10.1016/j.pediatrneurol.2014.10.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2014.10.006</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pilot Validation of the Tuberous Sclerosis-Associated Neuropsychiatric Disorders (TAND) Checklist
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Pediatric Neurology
Date
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2015
Subject
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psychosocial; children; Pediatrics; cognition; behavior; Neurosciences & Neurology; mental health; autism; gene; recommendations; academic; attention deficits; complex consensus conference; diagnostic-criteria; identification; neuropsychology; population; sample; TAND; tuberous sclerosis complex; behavioral problems; tuberous sclerosis; tool development; scale development
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Leclezio L; Jansen A; Whittemore V H; de Vries P J
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BACKGROUND: Tuberous sclerosis complex is a multisystem disorder that includes a range of tuberous sclerosis associated neuropsychiatric disorders (TAND). The lifetime prevalence rates of TAND are very high; yet surveys suggest that the majority of individuals with tuberous sclerosis never receive appropriate assessment or treatment for TAND. To aid systematic enquiry, a TAND Checklist was developed. Here, we performed pilot validation of the TAND Checklist. METHOD: Mixed methods were used across two stages. In stage 1, we gathered feedback on the Checklist from tuberous sclerosis "expert professionals" and "expert parents and caregivers." The aim was to examine face and content validity. Stage 2 involved the administration of the refined TAND Checklist to 20 parents of individuals with tuberous sclerosis concurrently with four widely used validated rating scales, to examine external validity and obtain qualitative feedback on face-to-face administration of the TAND Checklist. RESULTS: Twenty professionals and 62 parents and caregivers from 28 countries participated in the pilot. The TAND Checklist demonstrated good face and content validity with high overall mean and median scores. Qualitative analysis highlighted concerns about the likely use of the TAND Checklist, suggesting that family members and individuals with tuberous sclerosis should drive usage. Stage 2 results showed moderate-to-very good external validity across TAND domain and key subdomains. Internal consistency of domains and subdomains was acceptable to very good. Ninety-three percent of all participants (93%) reported four or more lifetime TAND behavioral difficulties. CONCLUSION: The pilot validation suggested that the TAND Checklist could provide a useful screening tool in clinical settings.
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<a href="http://doi.org/10.1016/j.pediatrneurol.2014.10.006" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2014.10.006</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
academic
attention deficits
Autism
Behavior
behavioral problems
Children
Cognition
complex consensus conference
de Vries P J
diagnostic-criteria
gene
identification
Jansen A
Leclezio L
Mental Health
neuropsychology
Neurosciences & Neurology
Pediatric Neurology
Pediatrics
Population
psychosocial
Recommendations
sample
scale development
TAND
tool development
Tuberous Sclerosis
Tuberous sclerosis complex
Whittemore V H