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40
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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
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<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
A name given to the resource
Pilot Validation of the Tuberous Sclerosis-Associated Neuropsychiatric Disorders (TAND) Checklist
Publisher
An entity responsible for making the resource available
Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
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
Creator
An entity primarily responsible for making the resource
Leclezio L; Jansen A; Whittemore V H; de Vries P J
Description
An account of the resource
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.
Identifier
An unambiguous reference to the resource within a given context
<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>
Rights
Information about rights held in and over the resource
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
-
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
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1186/1866-1955-6-10" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/1866-1955-6-10</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
A name given to the resource
Self-injury and aggression in tuberous sclerosis complex: cross syndrome comparison and associated risk markers
Publisher
An entity responsible for making the resource available
Journal of Neurodevelopmental Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Pain; Aggression; problem behavior; Neurosciences & Neurology; Tuberous sclerosis complex; functional-analysis; autism spectrum disorders; intellectual disabilities; ASD; challenging behavior; cognitive impairments; de-lange-syndrome; developmental-disabilities; early-childhood; Impulsivity; psychometric properties; Repetitive/stereotyped behaviour; Self-injury; behavioral problems; De Lange syndrome; tuberous sclerosis; trajectory; characteristics; pain behaviors; mood; low mood; hyperactivity; repetitive language use
Creator
An entity primarily responsible for making the resource
Eden K E; de Vries P J; Moss J; Richards C; Oliver C
Description
An account of the resource
Background: Research reporting prevalence rates of self-injurious and aggressive behaviour in people with tuberous sclerosis complex (TSC) is limited. No studies have compared rates of these behaviours in TSC with those in other syndrome groups matched for degree of disability or investigated risk markers for these behaviours in TSC. Methods: Data from the Challenging Behaviour Questionnaire were collected for 37 children, aged 4 to 15 years, with TSC. Odds ratios were used to compare rates of self-injury and aggression in children with TSC with children with idiopathic autism spectrum disorder (ASD), fragile X, Cornelia de Lange and Down syndromes. Characteristics were measured using the Mood Interest and Pleasure Questionnaire, the Activity Questionnaire, the Social Communication Questionnaire, the Repetitive Behaviour Questionnaire, the Wessex Behaviour Schedule and the revised Non-communicating Children Pain Checklist. Mann-Whitney U analyses were used to compare characteristics between individuals with self-injury and aggression and those not showing these behaviours. Results: Rates of self-injury and aggression in TSC were 27% and 50%, respectively. These are high but not significantly different from rates in children with Down syndrome or other syndrome groups. Both self-injury and aggression were associated with stereotyped and pain-related behaviours, low mood, hyperactivity, impulsivity and repetitive use of language. Children who engaged in self-injury also had lower levels of interest and pleasure and showed a greater degree of `insistence on sameness' than children who did not self-injure. Aggression was associated with repetitive behaviour. The majority of these associations remained significant when the association with level of adaptive functioning was controlled for. Conclusions: Behavioural profiles can be used to identify those most at risk of developing self-injury and aggression. Further research is warranted to understand the influence of such internal factors as mood, ASD symptomatology and pain on challenging behaviour in people with intellectual disability.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1866-1955-6-10" target="_blank" rel="noreferrer noopener">10.1186/1866-1955-6-10</a>
Rights
Information about rights held in and over the resource
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).
2014
Aggression
ASD
autism spectrum disorders
behavioral problems
challenging behavior
characteristics
cognitive impairments
De Lange syndrome
de Vries P J
de-lange-syndrome
Developmental-disabilities
early-childhood
Eden K E
functional-analysis
hyperactivity
impulsivity
Intellectual disabilities
Journal of Neurodevelopmental Disorders
low mood
Mood
Moss J
Neurosciences & Neurology
Oliver C
Pain
pain behaviors
problem behavior
psychometric properties
repetitive language use
Repetitive/stereotyped behaviour
Richards C
self-injury
Trajectory
Tuberous Sclerosis
Tuberous sclerosis complex
-
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
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1016/j.pediatrneurol.2014.10.004" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2014.10.004</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
A name given to the resource
Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist
Publisher
An entity responsible for making the resource available
Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
behavior; feeding difficulties; sleep disturbance; tuberous sclerosis; tool development; scale development; TAND checklist
Creator
An entity primarily responsible for making the resource
de Vries P J; Whittemore V H; Leclezio L; Byars A W; Dunn D; Ess K C; Hook D; King B H; Sahin M; J ansen A
Description
An account of the resource
BACKGROUND: Tuberous sclerosis complex is a multisystem genetic disorder with a range of physical manifestations that require evaluation, surveillance, and management. Individuals with tuberous sclerosis complex also have a range of behavioral, psychiatric, intellectual, academic, neuropsychologic, and psychosocial difficulties. These may represent the greatest burden of the disease. Around 90% of individuals with tuberous sclerosis complex will have some of these difficulties during their lifetime, yet only about 20% ever receive evaluation and treatment. The Neuropsychiatry Panel at the 2012 Tuberous Sclerosis Complex International Consensus Conference expressed concern about the significant "treatment gap" and about confusion regarding terminology relating to the biopsychosocial difficulties associated with tuberous sclerosis complex. METHODS: The Tuberous Sclerosis Complex Neuropsychiatry Panel coined the term TAND-tuberous sclerosis complex-associated neuropsychiatric disorders-to bring together these multidimensional manifestations of the disorder, and recommended annual screening for TAND. In addition, the Panel agreed to develop a TAND Checklist as a guide for screening. RESULTS: Here, we present an outline of the conceptualization of TAND, rationale for the structure of the TAND Checklist, and include the full US English version of the TAND Checklist. CONCLUSION: We hope that the unified term TAND and the TAND Checklist will raise awareness of the importance of tuberous sclerosis complex-associated neuropsychiatric disorders and of the major burden of disease associated with it, provide a shared language and a simple tool to describe and evaluate the different levels of TAND, alert clinical teams and families or individuals of the importance of screening, assessment, and treatment of TAND, and provide a shared framework for future studies of tuberous sclerosis complex-associated neuropsychiatric disorders.Copyright © 2015 Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pediatrneurol.2014.10.004" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2014.10.004</a>
Rights
Information about rights held in and over the resource
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
Behavior
Byars A W
de Vries P J
Dunn D
Ess K C
feeding difficulties
Hook D
J ansen A
King B H
Leclezio L
Pediatric Neurology
Sahin M
scale development
sleep disturbance
TAND checklist
tool development
Tuberous Sclerosis
Whittemore V H
-
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
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1002/ajmg.a.32690" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.32690</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
A name given to the resource
Neuropsychological attention deficits in tuberous sclerosis complex (TSC)
Publisher
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American Journal of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Male; Case-Control Studies; Child; Humans; Adolescent; Female; Neuropsychological Tests; Task Performance and Analysis; Attention Deficit Disorder with Hyperactivity/psychology; Tuberous Sclerosis/psychology; Tuberous Sclerosis; trajectory; characteristics; neuropsychological attention deficits; alertness
Creator
An entity primarily responsible for making the resource
de Vries P J; Gardiner J; Bolton P F
Description
An account of the resource
Tuberous sclerosis complex (TSC) (OMIM191100) is a genetic disorder with multi-system involvement including neurodevelopmental manifestations. There is great interest in understanding the pathogenetic mechanisms underlying these neurobehavioral and neurocognitive manifestations. However, there are still significant gaps in knowledge about the exact neuropsychiatric phenotypes observed in TSC. Here we report on the first systematic evaluation of neuropsychological attentional skills in a population-derived sample of children and adolescents with TSC. The study showed that, even when age, gender, IQ, and intra-familial clustering were controlled for, the TSC group had significantly lower scores than their unaffected siblings on a range of neuropsychological attentional tasks, and that they had significantly more neuropsychological attention deficits. Eighteen of the 20 children (90%) showed deficits on one or more attentional tasks, with dual task performance most consistently impaired (85%) and visual selective attention a relative strength. Active seizures and anti-epilepsy medication did not influence attentional profiles. Furthermore, parent rating of attention-related behaviors were not able to identify children at risk of neuropsychological deficits. The findings suggest that clinical neuropsychological evaluation of attentional skills should be performed in children and adolescents with TSC even when they have normal global intellectual abilities, no seizures, and no disruptive behaviors. Results suggest that the mechanisms underlying these deficits may include contributions from structural, seizure-related and molecular factors.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.32690" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.32690</a>
Rights
Information about rights held in and over the resource
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).
2009
Adolescent
alertness
American Journal of Medical Genetics Part A
Attention Deficit Disorder with Hyperactivity/psychology
Bolton P F
Case-Control Studies
characteristics
Child
de Vries P J
Female
Gardiner J
Humans
Male
neuropsychological attention deficits
Neuropsychological Tests
Task Performance and Analysis
Trajectory
Tuberous Sclerosis
Tuberous Sclerosis/psychology