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Pediatrics Sep 2014Global developmental delay and intellectual disability are relatively common pediatric conditions. This report describes the recommended clinical genetics diagnostic... (Review)
Review
Global developmental delay and intellectual disability are relatively common pediatric conditions. This report describes the recommended clinical genetics diagnostic approach. The report is based on a review of published reports, most consisting of medium to large case series of diagnostic tests used, and the proportion of those that led to a diagnosis in such patients. Chromosome microarray is designated as a first-line test and replaces the standard karyotype and fluorescent in situ hybridization subtelomere tests for the child with intellectual disability of unknown etiology. Fragile X testing remains an important first-line test. The importance of considering testing for inborn errors of metabolism in this population is supported by a recent systematic review of the literature and several case series recently published. The role of brain MRI remains important in certain patients. There is also a discussion of the emerging literature on the use of whole-exome sequencing as a diagnostic test in this population. Finally, the importance of intentional comanagement among families, the medical home, and the clinical genetics specialty clinic is discussed.
Topics: Developmental Disabilities; Disability Evaluation; Female; Humans; Intellectual Disability; Karyotyping; Male
PubMed: 25157020
DOI: 10.1542/peds.2014-1839 -
Intervention and support for siblings of youth with developmental disabilities: a systematic review.Clinical Child and Family Psychology... Mar 2015Both the population of siblings of youth with developmental disabilities (DDs) and the popularity of clinical services designed for these youth are on the rise. However,... (Review)
Review
Both the population of siblings of youth with developmental disabilities (DDs) and the popularity of clinical services designed for these youth are on the rise. However, the research base for such services has yet to be evaluated. A systematic review of studies on intervention and support for siblings of youth with DDs was conducted in order to evaluate the current state of the literature and provide recommendations for research and practice. Sixteen articles were selected and reviewed in terms of their experimental design, participant characteristics, measurement, intervention or support group protocol, outcomes, and dissemination of findings. Results indicate substantial variability in both methodology and outcomes across sibling-focused intervention and support group studies, which put the overall effects and utility of these services into question. Recommendations for future research are outlined, with a focus on advancing a more systematic and careful approach to asking and effectively answering questions about siblings, their families, and meaningful services for both.
Topics: Adolescent; Child; Developmental Disabilities; Humans; Parenting; Self-Help Groups; Sex Factors; Siblings; Social Behavior; Social Support
PubMed: 25315924
DOI: 10.1007/s10567-014-0175-1 -
Journal of the American Academy of... May 2023To summarize the current state of the literature regarding emotion dysregulation (ED) in syndromic intellectual disabilities (S-IDs) in 6 of the most common forms of... (Review)
Review
OBJECTIVE
To summarize the current state of the literature regarding emotion dysregulation (ED) in syndromic intellectual disabilities (S-IDs) in 6 of the most common forms of S-IDs-Down syndrome, fragile X syndrome (FXS), tuberous sclerosis complex, Williams syndrome, Prader-Willi syndrome, and Angelman syndrome-and to determine future research directions for identification and treatment of ED.
METHOD
PubMed bibliographic database was searched from date of inception to May 2021. PRISMA 2020 guidelines were followed with the flowchart, table of included studies, list of excluded studies, and checklist provided. Filters applied included human research and English. Only original research articles were included in the final set, but review articles were used to identify secondary citations of primary studies. All articles were reviewed for appropriateness by 2 authors and summarized. Inclusion criteria were met by 145 articles (Down syndrome = 29, FXS = 55, tuberous sclerosis complex = 11, Williams syndrome = 18, Prader-Willi syndrome = 24, Angelman syndrome = 8).
RESULTS
Each syndrome review was summarized separately and further subdivided into articles related to underlying neurobiology, behaviors associated with ED, assessment, and targeted intervention. FXS had the most thorough research base, followed by Down syndrome and Prader-Willi syndrome, with the other syndromes having more limited available research. Very limited research was available regarding intervention for all disorders except FXS.
CONCLUSION
Core underlying characteristics of S-IDs appear to place youth at higher risk for ED, but further research is needed to better assess and treat ED in S-IDs. Future studies should have a standard assessment measure of ED, such as the Emotion Dysregulation Inventory, and explore adapting established curricula for ED from the neurotypical and autism spectrum disorder fields.
Topics: Child; Adolescent; Humans; Prader-Willi Syndrome; Angelman Syndrome; Down Syndrome; Autism Spectrum Disorder; Developmental Disabilities; Tuberous Sclerosis; Intellectual Disability; Fragile X Syndrome; Williams Syndrome; Emotions
PubMed: 36007813
DOI: 10.1016/j.jaac.2022.06.020 -
International Journal of Environmental... Jul 2022The assessment of challenging behavior exhibited by people with intellectual and developmental disabilities is essential for the planning of prevention and intervention... (Review)
Review
The assessment of challenging behavior exhibited by people with intellectual and developmental disabilities is essential for the planning of prevention and intervention programs. This review aimed to identify and analyze the standardized instruments that exclusively focus on the assessment of challenging behavior. We identified and organized 141 articles into four categories: original instrument studies, validation studies, relational studies, and intervention studies. The results identified 24 instruments that generally show high-quality psychometric properties and other utilities beyond the observation of the presence of challenging behavior and diagnostic categorization. Age, level of adaptive behavior, disability, presence of autism spectrum disorder, and medication are some of the variables that were found to be possibly related to the occurrence of challenging behavior. Additionally, the results suggest that interventions focused on supporting positive behavior or providing training on behavior to professionals and caregivers significantly reduced the occurrence of these behaviors. Instruments that help us to understand and measure the challenging behavior exhibited by people with intellectual and developmental disabilities are essential for the design of effective evaluation and intervention protocols.
Topics: Autism Spectrum Disorder; Child; Developmental Disabilities; Disabled Persons; Humans; Intellectual Disability; Psychometrics
PubMed: 35886552
DOI: 10.3390/ijerph19148701 -
BMC Oral Health Oct 2023People with Intellectual and developmental disabilities (IDDs) experience oral health inequality due to myriad of risk factors and complex needs. Sensory processing... (Meta-Analysis)
Meta-Analysis
Effectiveness of sensory adaptive dental environments to reduce psychophysiology responses of dental anxiety and support positive behaviours in children and young adults with intellectual and developmental disabilities: a systematic review and meta-analyses.
BACKGROUND
People with Intellectual and developmental disabilities (IDDs) experience oral health inequality due to myriad of risk factors and complex needs. Sensory processing difficulties, maladaptive behaviours and dental anxiety contribute to difficulties in receiving preventive and routine dental treatments. This study aimed to systematically review the evidence on the effectiveness of sensory adaptive dental environments (SADE) for children and young adults (up to the ages 24 years) with IDD to address cooperation and dental anxiety.
METHODS
This review was reported according to The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. MEDLINE (Ovid), The Cochrane Library, Embase, Google Scholar, Web of Science and OT Seeker were searched using appropriate terms to identify Randomised Control Trails (RCTs) that matched inclusion criteria. Screening was conducted by two reviewers after de-duplication based on titles and abstracts followed by full text retrieval. Quality of the included studies was assessed using Cochrane Risk of Bias (ROB)-2 for crossover trials and data extracted by two reviewers. The details of the interventions and effectiveness were compared and discussed narratively, and comparable outcomes were included to meta-analyses using R software.
RESULTS
A total of 622 articles were identified and five articles met eligibility for inclusion. Three studies used multi-sensory adaptations and one used single sensory adaptation of music. Narrative synthesis showed some evidence of SADE reducing magnitude and duration, although, questionable for reducing the number of maladaptive behaviours. Two studies demonstrated conflicting evidence of the effect of SADE on cooperation. Three studies demonstrated significant positive impact of SADE on psychophysiological outcomes. Despite an overall tendency to favour SADE, no statistically significant difference of maladaptive behaviours was found between SADE and regular dental environment (RDE) (Standardised mean change (SMC) = 0.51; 95% Confidence Interval (CI) -0.20 to 1.22; p = 0.161). SADE was superior to RDE (SMC -0.66; 95% CI -1.01 to -0.30; p = < 0.001) in reducing psychophysiological responses of dental anxiety.
CONCLUSION
Current evidence suggests that adapting visual, tactile, and auditory aspects of the dental environment in a single or multi-sensory approach demonstrates small positive effects on psychophysiological responses and maladaptive behaviours of dental anxiety for people with IDD.
TRIAL REGISTRATION
The title of this review was registered with PROSPERO (CRD42022322083).
Topics: Child; Humans; Young Adult; Dental Anxiety; Developmental Disabilities; Oral Health; Psychophysiology; Risk Factors
PubMed: 37858057
DOI: 10.1186/s12903-023-03445-6 -
Journal of Intellectual Disabilities :... Jun 2023This review synthesizes the available literature regarding factors which facilitate a sense of belonging in people with intellectual and developmental disabilities, and...
This review synthesizes the available literature regarding factors which facilitate a sense of belonging in people with intellectual and developmental disabilities, and provide a comprehensive integrative view of the subject. Four electronic databases were searched, and 13 studies met inclusion criteria for review. The "standard quality assessment criteria for evaluating primary research papers from a variety of fields" indicated satisfactory quality. Factors which facilitate a sense of belonging in people with intellectual and developmental disabilities were analyzed into themes. Sense of belonging is enhanced by feeling respected, accepted, and valued (Subjectivity). These experiences are more likely to be achieved in a familiar and safe environment (Dynamism), and with access to platforms for social interactions (Groundedness), where a sense of relatedness and connectedness achieved by shared experiences with others (Reciprocity). Sense of belonging is associated with committed action of people with disability, taking assertive action or being agentic (Self-determination). Sense of belonging is a unique concept that should be addressed in disability research and practice.
Topics: Child; Humans; Intellectual Disability; Developmental Disabilities; Disabled Persons; Social Interaction; Personal Autonomy
PubMed: 35271785
DOI: 10.1177/17446295211068424 -
Journal of Applied Research in... Mar 2022The abuse of adults with intellectual and developmental disabilities in care services seems to be relatively common, although there are anecdotal suggestions that abuse... (Review)
Review
BACKGROUND
The abuse of adults with intellectual and developmental disabilities in care services seems to be relatively common, although there are anecdotal suggestions that abuse may be predictable and preventable.
METHOD
Evidence related to how abuse is detected and prevented within services was reviewed. Database and ancestry searches were conducted, and the methodological quality of studies assessed using the mixed methods appraisal tool.
RESULTS
A total of 48 articles were reviewed. The characteristics of victims, perpetrators and organisations were summarised. Several recommendations for how abuse can be detected and prevented were made, including better staff training, supervision and monitoring of services. The quality of studies limits the reliability and validity of research findings.
CONCLUSION
Risk and protective factors related to the abuse of adults with intellectual and other developmental disabilities remain largely consistent. Further research is required to support the implementation of recommendations aimed to detect and prevent abuse.
Topics: Adult; Child; Developmental Disabilities; Humans; Intellectual Disability; Reproducibility of Results
PubMed: 34697867
DOI: 10.1111/jar.12954 -
Clinical Psychology Review Jun 2022Self-injurious behavior (SIB) by individuals with intellectual and developmental disabilities including autism (I/DD) is among the most clinically disturbing, socially... (Review)
Review
Self-injurious behavior (SIB) by individuals with intellectual and developmental disabilities including autism (I/DD) is among the most clinically disturbing, socially costly, and scientifically challenging behavior disorders. Forty years of clinical research has produced a knowledge base supporting idiographic behavioral assessment and treatment approaches. Despite the treatment progress, from a public health and population perspective, we argue it is less clear that we have reduced the disorder's burden. The developmental course of the disorder is mostly unknown and empirically informed population-level models of risk are absent. In this review, we systematically examined the published scientific literature specific to risk for SIB in the I/DD population. We reviewed study methodology in detail intentionally informed by an epidemiological perspective with a set of questions intended to test the quality of the inferences about risk. Results are discussed in terms of conceptual, methodological, and translational issues with respect to what needs to be done to create credible and useful clinical models for SIB risk in the I/DD population.
Topics: Child; Developmental Disabilities; Humans; Self-Injurious Behavior
PubMed: 35580423
DOI: 10.1016/j.cpr.2022.102158 -
Archives of Disease in Childhood. Fetal... Mar 2020To examine if therapeutic hypothermia reduces the composite outcome of death, moderate or severe disability at 18 months or more after mild neonatal encephalopathy (NE). (Meta-Analysis)
Meta-Analysis
OBJECTIVES
To examine if therapeutic hypothermia reduces the composite outcome of death, moderate or severe disability at 18 months or more after mild neonatal encephalopathy (NE).
DATA SOURCE
MEDLINE, Cochrane database, Scopus and ISI Web of Knowledge databases, using 'hypoxic ischaemic encephalopathy', 'newborn' and 'hypothermia', and 'clinical trials' as medical subject headings and terms. Manual search of the reference lists of all eligible articles and major review articles and additional data from the corresponding authors of selected articles.
STUDY SELECTION
Randomised and quasirandomised controlled trials comparing therapeutic hypothermia with usual care.
DATA EXTRACTION
Safety and efficacy data extracted independently by two reviewers and analysed.
RESULTS
We included the data on 117 babies with mild NE inadvertently recruited to five cooling trials (two whole-body cooling and three selective head cooling) of moderate and severe NE, in the meta-analysis. Adverse outcomes occurred in 11/56 (19.6%) of the cooled babies and 12/61 (19.7%) of the usual care babies (risk ratio 1.11 (95% CIs 0.55 to 2.25)).
CONCLUSIONS
Current evidence is insufficient to recommend routine therapeutic hypothermia for babies with mild encephalopathy and significant benefits or harm cannot be excluded.
Topics: Brain Diseases; Developmental Disabilities; Humans; Hypothermia, Induced; Infant, Newborn; Infant, Newborn, Diseases; Randomized Controlled Trials as Topic
PubMed: 30567775
DOI: 10.1136/archdischild-2018-315711 -
Frontiers in Psychiatry 2022Individuals with developmental disabilities present with perceptuo-motor, social communication, and cognitive impairments that often relate to underlying atypical brain...
Individuals with developmental disabilities present with perceptuo-motor, social communication, and cognitive impairments that often relate to underlying atypical brain structure and functioning. Physical activity/movement interventions improve behavioral performance of individuals with and without developmental disabilities. Majority of the evidence on potential neural mechanisms explaining the impact of physical activity/movement interventions is based on studies in individuals with typical development; there is a dearth of systematic reviews synthesizing the neural effects of physical activity/movement interventions in individuals with developmental disabilities. In this systematic review, we have gathered evidence on the neural effects of physical activity/movement interventions from 32 papers reporting substantial neural effects and behavioral improvements in individuals with developmental disabilities. Chronic intervention effects (multiple sessions) were greater than acute intervention effects (single session). Specifically, using electroencephalogram, functional magnetic resonance imaging, diffusion tensor imaging, and functional near-infrared spectroscopy, studies found physical activity/movement intervention-related changes in neural activity, indicating normalization of cortical arousal in individuals with attention-deficit /hyperactivity disorder (ADHD), increased social brain connectivity in individuals with autism spectrum disorder (ASD), and more efficient executive functioning processes in individuals with a wide range of other developmental disabilities. Despite promising results, more research is clearly needed in this area with larger sample sizes, using standardized neuroimaging tools/variables, and across multiple diagnoses to further explore the neural mechanisms underlying physical activity/movement interventions and to replicate findings from the present review.
PubMed: 35242063
DOI: 10.3389/fpsyt.2022.794652