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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 -
The Cochrane Database of Systematic... 2002Fragile X is the most common cause of mental retardation after Down syndrome. It is the commonest inherited cause of mental retardation, and results from a dynamic... (Review)
Review
BACKGROUND
Fragile X is the most common cause of mental retardation after Down syndrome. It is the commonest inherited cause of mental retardation, and results from a dynamic mutation in a gene on the long arm of the X chromosome. Various strategies are used for prenatal screening.
OBJECTIVES
To determine whether pre-conceptual or antenatal screening for Fragile X carrier status in apparently low risk women confers any additional benefit over the existing practice of offering testing to women thought to be at increased risk.
SEARCH STRATEGY
We searched the Cochrane Pregnancy and Childbirth Group trials register (November 2001), the Cochrane Controlled Trials Register (The Cochrane Library Issue 3, 2001), MEDLINE (1980 to 2001), and reference lists of articles.
SELECTION CRITERIA
Randomised clinical trials comparing women being tested regardless of family history (intervention group) with women tested only when there is a family history of either fragile X and/or other undiagnosed mental illness/impairment (control group).
DATA COLLECTION AND ANALYSIS
Three reviewers independently assessed trial quality and extracted data.
MAIN RESULTS
No trials were included.
REVIEWER'S CONCLUSIONS
No information is available from randomised trials to indicate whether routine pre-conceptual or antenatal screening for fragile X carrier status confers any benefit over testing women thought to be at increased risk.
Topics: Female; Fragile X Syndrome; Humans; Preconception Care
PubMed: 11869607
DOI: 10.1002/14651858.CD001806 -
Mutation Research. Reviews in Mutation... 2022Whole-exome sequencing (WES) is useful for molecular diagnosis, family genetic counseling, and prognosis of intellectual disability (ID). However, ID molecular diagnosis... (Meta-Analysis)
Meta-Analysis Review
Whole-exome sequencing (WES) is useful for molecular diagnosis, family genetic counseling, and prognosis of intellectual disability (ID). However, ID molecular diagnosis ascertainment based on WES is highly dependent on de novo mutations (DNMs) and variants of uncertain significance (VUS). The quantification of DNM frequency in ID molecular diagnosis ascertainment and the biological mechanisms common to genes with VUS may provide objective information about WES use in ID diagnosis and etiology. We aimed to investigate and estimate the rate of ID molecular diagnostic assessment by WES, quantify the contribution of DNMs to this rate, and biologically and functionally characterize the genes whose mutations were identified through WES. A PubMed/Medline, Web of Science, Scopus, Science Direct, BIREME, and PsycINFO systematic review and meta-analysis was performed, including studies published between 2010 and 2022. Thirty-seven articles with data on ID molecular diagnostic yield using the WES approach were included in the review. WES testing accounted for an overall diagnostic rate of 42% (Confidence interval (CI): 35-50%), while the estimate restricted to DNMs was 11% (CI: 6-18%). Genetic information on mutations and genes was extracted and split into two groups: (1) genes whose mutation was used for positive molecular diagnosis, and (2) genes whose mutation led to uncertain molecular diagnosis. After functional enrichment analysis, in addition to their expected roles in neurodevelopment, genes from the first group were enriched in epigenetic regulatory mechanisms, immune system regulation, and circadian rhythm control. Genes from uncertain diagnosis cases were enriched in the renin angiotensin pathway. Taken together, our results support WES as an important approach to the molecular diagnosis of ID. The results also indicated relevant pathways that may underlie the pathogenesis of ID with the renin-angiotensin pathway being suggested to be a potential pathway underlying the pathogenesis of ID.
Topics: Humans; Exome; Exome Sequencing; Intellectual Disability; Renin-Angiotensin System
PubMed: 35905832
DOI: 10.1016/j.mrrev.2022.108428 -
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 -
Seizure Jul 2015Epilepsy is highly prevalent in people with intellectual disabilities and mortality is increased in people with epilepsy generally. This review summarises research on... (Review)
Review
PURPOSE
Epilepsy is highly prevalent in people with intellectual disabilities and mortality is increased in people with epilepsy generally. This review summarises research on the comparative risk of mortality in people with intellectual disabilities and epilepsy compared to the general population, people with intellectual disabilities without epilepsy, and people with epilepsy without intellectual disabilities.
METHOD
Studies were identified via electronic searches using Medline, Cinahl and PsycINFO and cross-citations. Information extracted from studies was tabulated and reviewed narratively.
RESULTS
Sixteen studies met the inclusion criteria. Epilepsy was associated with increased mortality in people with intellectual disabilities in most studies, particularly in those experiencing recent seizures. Further research is needed to substantiate some of the reported findings.
CONCLUSION
Services must be equipped with the skills and information needed to manage this condition in order to minimise the risk of death in people with intellectual disabilities and epilepsy.
Topics: Epilepsy; Humans; Intellectual Disability
PubMed: 26076855
DOI: 10.1016/j.seizure.2015.04.004 -
Trauma, Violence & Abuse Apr 2022Individuals with intellectual disabilities (IDs) are at increased susceptibility to adverse life experiences and trauma sequelae. There is a disparate range of...
Individuals with intellectual disabilities (IDs) are at increased susceptibility to adverse life experiences and trauma sequelae. There is a disparate range of therapeutic interventions for post-traumatic stress disorder (PTSD) and associated symptoms. This systematic review aimed to appraise the effectiveness of both cognitive behavioral therapy (CBT) and eye movement desensitization and reprocessing (EMDR) for PTSD and associated symptoms for both adults and children with mild, moderate, or severe intellectual delay. A systematic search, in line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, of the PsychInfo, PubMed, Cochrane Database of Systematic Reviews, and MEDLINE databases were performed, and all relevant articles published between 2010 and March 2020 were included. A total of 11 articles were included, eight that focused on EMDR and three on CBT. The methodological quality of many of these articles was generally weak. Tentative findings suggest that EMDR and CBT are both acceptable and feasible treatment options among adults and children with varying levels of intellectual delay, but no firm conclusions can be drawn regarding effectiveness due to small sample sizes, lack of standardized assessment, and a paucity of methodological rigorous treatment designs. This review highlights the continued use of therapeutic approaches with clients presenting with IDs and PTSD. It adds to the extant literature by providing an expansive and broad overview of the current effectiveness of both EMDR and CBT. Further high-quality research is needed to provide more conclusive findings regarding treatment effectiveness and modifications to treatment needed with this population.
Topics: Adult; Child; Cognitive Behavioral Therapy; Eye Movement Desensitization Reprocessing; Humans; Intellectual Disability; Stress Disorders, Post-Traumatic; Treatment Outcome
PubMed: 32969328
DOI: 10.1177/1524838020960219 -
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 -
Journal of Applied Research in... Sep 2018Constipation can lead to serious health issues and death. This systematic review summarizes international research pertaining to the management of constipation in people... (Review)
Review
BACKGROUND
Constipation can lead to serious health issues and death. This systematic review summarizes international research pertaining to the management of constipation in people with intellectual disability.
METHOD
Studies published from 1990 to 2017 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes.
RESULTS
Eighteen studies were reviewed in relation to three themes: laxative receipt; interventions (dietary fibre, abdominal massage and macrogol); and staff issues (knowledge and training). Laxative polypharmacy was common. Studies report positive results for dietary fibre and abdominal massage although study quality was limited.
CONCLUSION
The main management response to constipation in people with intellectual disability is laxative use despite limited effectiveness. An improved evidence base is required to support the suggestion that an individualized, integrated bowel management programme may reduce constipation and associated health conditions in people with intellectual disability.
Topics: Constipation; Humans; Intellectual Disability
PubMed: 29168259
DOI: 10.1111/jar.12426 -
Psychiatric Genetics Aug 2016Epidemiological studies report high rates of schizophrenia in individuals with intellectual disability (ID). However, this subject has not been reviewed systematically.... (Meta-Analysis)
Meta-Analysis Review
Epidemiological studies report high rates of schizophrenia in individuals with intellectual disability (ID). However, this subject has not been reviewed systematically. We aim to review studies that report the prevalence of nonaffective psychosis in a population with ID and estimate the prevalence of schizophrenia in this population. We performed a literature search using the PsychINFO, MEDLINE and EMBASE (from inception to 2 October 2014). We performed a manual search of citations from relevant papers identified through the databases. We identified 887 titles and after screening abstracts, identified 60 full-text articles. We identified 25 studies with 27 datasets for inclusion in the systematic review and meta-analysis. The prevalence rate was at least three times higher than the general population. There was a wide variation in the methodology, setting and sample size of the studies. Only one study reported a prevalence rate lower than the general population. The prevalence of psychosis in a population with ID is at least three times higher than that in the general population.
Topics: Humans; Intellectual Disability; Prevalence; Psychotic Disorders; Schizophrenia
PubMed: 27096221
DOI: 10.1097/YPG.0000000000000137 -
Research in Developmental Disabilities Dec 2015To present an analysis of the evidence related to the prevalence of diabetes in people with intellectual disabilities (ID), their experiences of their condition and... (Review)
Review
OBJECTIVE
To present an analysis of the evidence related to the prevalence of diabetes in people with intellectual disabilities (ID), their experiences of their condition and treatment and those of their carers.
MATERIALS AND METHODS
A systematic literature review was conducted. A total of 22 studies exploring diabetes prevalence and 5 exploring views and experiences of diabetes in people with ID were identified and included. A narrative synthesis approach was utilised to amalgamate data extracted from the included studies regarding some 49,046 participants with ID and diabetes and 31 care professionals and family members across Europe, North America, New Zealand, Australia, China and Hong Kong.
RESULTS
Prevalence rates of diabetes in people with ID were highly varied, ranging from 0.4% to 25%. 7 studies reported significantly higher rates of diabetes in people with ID than the general population. People with ID reported a basic understanding of diabetes and wanted to know more. Carers reported that they lack diabetes knowledge and do not routinely encourage diabetes self-management skills. Several studies neglected to report vital demographic information such as participants' level of ID (13 studies) and diabetes type (16 studies) and the quality of included prevalence studies was variable.
CONCLUSIONS
Further research in this field is required, notably prevalence studies which control for participant demographics and personal situations to obtain more accurate diabetes prevalence rates in this population group. People with ID and diabetes should be encouraged to participate in future research and we recommend exploring the feasibility of adapting current mainstream diabetes management programmes for these individuals.
Topics: Attitude of Health Personnel; Comorbidity; Diabetes Mellitus; Education of Intellectually Disabled; Health Knowledge, Attitudes, Practice; Humans; Intellectual Disability; Patient Education as Topic; Prevalence; Self Care
PubMed: 26496008
DOI: 10.1016/j.ridd.2015.10.003