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Neuroscience Letters Sep 2021People with disabilities face many travel barriers. Autonomous vehicles and services may be one solution. The purpose of this project was to conduct a systematic review...
People with disabilities face many travel barriers. Autonomous vehicles and services may be one solution. The purpose of this project was to conduct a systematic review of the grey and scientific literature on autonomous vehicles for people with disabilities. Scientific evidence (n = 35) was limited to four observational studies with a very low level of evidence, qualitative studies, reviews, design and model reports, and policy proposals. Literature on older adults was most prevalent. Grey literature (n = 37) spanned a variety of media and sources and focuses on a variety of disability and impairment types. Results highlight opportunities and barriers to accessible and usable AVs and services, outline research gaps to set a future research agenda, and identify implications for policy and knowledge translation. People with disabilities are a diverse group, and accessible and usable design solutions will therefore need to be tailored to each group's needs, circumstances, and preferences. Future research in diverse disability groups should include more participatory action design and engineering studies and higher quality, prospective experimental studies to evaluate outcomes of accessible and usable AV technology. Studies will need to address not only all vehicle features but also the entire travel journey.
Topics: Automobiles; Autonomous Vehicles; Disabled Persons; Humans; Travel
PubMed: 34237416
DOI: 10.1016/j.neulet.2021.136103 -
Journal of Applied Research in... Mar 2021People with intellectual disabilities can experience homelessness, and some of the reasons differ from the general homeless population. Specific policy and practice... (Review)
Review
BACKGROUND
People with intellectual disabilities can experience homelessness, and some of the reasons differ from the general homeless population. Specific policy and practice responses are required.
METHOD
A systematic review of studies examining homelessness among people with intellectual disabilities utilizing CINAHL, MEDLINE, PsycINFO and Sociological Abstracts databases from inception to November 2019.
RESULTS
The search produced 259 papers, and following screening, a total of 13 papers were included in the review. The themes identified were (i) pathways into homelessness, (ii) experiencing homelessness and (iii) routes out of homelessness.
CONCLUSIONS
People with ID become homeless due to multifactorial issues. The identification of people within homeless services and their care and support concerns remains challenging, impacting upon the provision of assessments, interventions, care and supports. Psychosocial assessments, interventions and supports are necessary to assist people with ID to leave homelessness.
Topics: Ill-Housed Persons; Humans; Intellectual Disability
PubMed: 32959955
DOI: 10.1111/jar.12815 -
BJPsych Open Nov 2019Caring for a child with intellectual disabilities can be a very rewarding but demanding experience. Research in this area has primarily focused on mothers, with...
BACKGROUND
Caring for a child with intellectual disabilities can be a very rewarding but demanding experience. Research in this area has primarily focused on mothers, with relatively little attention given to the mental health of fathers.
AIMS
The purpose of this review was to summarise the evidence related to the mental health of fathers compared with mothers, and with fathers in the general population.
METHOD
A meta-analysis was undertaken of all studies published by 1 July 2018 in Medline, PsycINFO, CINAHL and EMBASE, using terms on intellectual disabilities, mental health and father carers. Papers were selected based on pre-defined inclusion and exclusion criteria.
RESULTS
Of 5544 results, 20 studies met the inclusion criteria and 12 had appropriate data for meta-analysis. For comparisons of fathers with mothers, mothers were significantly more likely to have poor general mental health and well-being (standardised mean difference (SMD) -0.38, 95% CI -0.56 to -0.20), as well as higher levels of depression (SMD, -0.46; 95% CI -0.68 to -0.24), stress (SMD, -0.32; 95% CI -0.46 to -0.19) and anxiety (SMD, -0.30; 95% CI -0.50 to -0.10).
CONCLUSIONS
There is a significant difference between the mental health of father and mother carers, with fathers less likely to exhibit poor mental health. However, this is based on a small number of studies. More data is needed to determine whether the general mental health and anxiety of father carers of a child with intellectual disabilities differs from fathers in the general population.
PubMed: 31694727
DOI: 10.1192/bjo.2019.75 -
Changes in bone mineral density in Down syndrome individuals: a systematic review and meta-analysis.Osteoporosis International : a Journal... Jan 2022Data evaluating changes in bone mineral density (BMD) in Down syndrome (DS) individuals remains controversial. Therefore, we conducted a systematic review and... (Meta-Analysis)
Meta-Analysis Review
Data evaluating changes in bone mineral density (BMD) in Down syndrome (DS) individuals remains controversial. Therefore, we conducted a systematic review and meta-analysis to better understand associations between BMD and DS. A systematic literature search of PubMed, EMBASE, Web of Science, and the Cochrane Library up until 1st January 2021 was conducted. We used the keywords "bone mineral density" and "Down Syndrome." Fifteen studies were included. Overall, our results showed a significant decrease in BMD of total body (TB BMD) [MD = - 0.18; 95% CI (- 0.23 and - 0.12), P < 0.00001, I = 89%], total hip (TH BMD) [MD = - 0.12; 95% CI (- 0.15 and - 0.10), P < 0.00001, I = 0%], lumbar spine (LS BMD) [MD = - 0.12; 95% CI (- 0.14 and - 0.09), P < 0.00001, I = 18%], and femoral neck (FN BMD) [MD = - 0.08; 95% CI (- 0.10 and - 0.06), P < 0.00001, I = 0%] in DS individuals when compared with controls. Moreover, the volumetric BMD of lumbar spine (LS vBMD) [MD = - 0.01; 95% CI (- 0.02 and - 0.01), P = 0.0004, I = 19%] also showed a decreasing tendency while the volumetric BMD of the femoral neck (FN vBMD) [MD = 0.01; 95% CI (0.00 and 0.02), P = 0.02, I = 0%] was elevated in DS individuals versus controls. These findings demonstrated that individuals with DS had a decreased total and regional (TH, LS, and FN) BMD when compared with the general population. Additionally, when BMD was adjusted for skeletal volume, LS vBMD was also lower, while FN vBMD was elevated in DS individuals versus controls.
Topics: Absorptiometry, Photon; Bone Density; Down Syndrome; Femur Neck; Humans; Lumbar Vertebrae
PubMed: 34383099
DOI: 10.1007/s00198-021-06070-7 -
Journal of Applied Research in... Jan 2022People with intellectual disabilities have a high risk of developing mental ill-health. Treatment is often neglected and diagnosis is misattributed to a person's... (Review)
Review
BACKGROUND
People with intellectual disabilities have a high risk of developing mental ill-health. Treatment is often neglected and diagnosis is misattributed to a person's disability. Standard psychosocial interventions can improve a person's well-being. This review aimed to understand what interventions are being delivered, any benefits, and future recommendations.
METHODS
Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were followed, and the review registered with PROSPERO-CRD42020160254. Databases searched included: MEDLINE, Embase, and PsycINFO. A framework synthesis approach was used to present the findings.
RESULTS
There are limited psychosocial interventions offered for this population. When groups are delivered having a creative element, multiple activities over a short period of time, with breaks and group rules outcomes can be improved.
CONCLUSIONS
Adaptations and reasonable adjustments should be used specifically to a person's ability. A mixed-method design allows people to share their experiences alongside quantitative data that provides clinical information.
Topics: Disabled Persons; Humans; Intellectual Disability; Mental Health; Psychosocial Intervention
PubMed: 34337837
DOI: 10.1111/jar.12919 -
European Journal of Paediatric... Jul 2022The aim of the study was to identify and characterize outcome measures for objective and subjective assessment in persons with Rett syndrome (RS). (Review)
Review
OBJECTIVE
The aim of the study was to identify and characterize outcome measures for objective and subjective assessment in persons with Rett syndrome (RS).
METHODS
A systematic review was conducted consulting the EBSCO, Cochrane, Web of Science, Scielo, MEDLINE and PsycINFO databases for published studies describing the use of patient-reported outcome measures (PROMs) and other outcome measures in persons with RS. Validation studies and observational studies were included. The PROMs were first described, and then the measurement properties were evaluated using predefined criteria according to the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN). The outcome measures were then grouped according to the International Classification of Functioning, Disability and Health (ICF) to establish a relationship between outcome measures and ICF domains.
RESULTS
Twenty out of 2327 articles were appraised, and seventeen different outcome measures were identified and described. Ten outcome measures corresponded to evaluation questionnaires, while the remaining seven assessed functional outcomes: walking distance, physical activity level and ability to interact visually. A relation between these outcome measures that assess RS and the ICF allows understanding that most of the instruments (fifteen) include the assessment of activity limitations.
CONCLUSIONS
The findings of this study seem to be promising for their use by clinicians and researchers, although they have methodological limitations. The accuracy and quality of these individual outcome measures should continue to be assessed in an attempt to gather a consensus on the best tools used in RS.
Topics: Consensus; Humans; Outcome Assessment, Health Care; Psychometrics; Quality of Life; Rett Syndrome; Surveys and Questionnaires
PubMed: 35717810
DOI: 10.1016/j.ejpn.2022.06.003 -
Journal of Intellectual Disability... May 2021Children and adolescents with intellectual disabilities (ID) participate in low levels of physical activity. To inform the development of interventions, we need to... (Review)
Review
BACKGROUND
Children and adolescents with intellectual disabilities (ID) participate in low levels of physical activity. To inform the development of interventions, we need to better understand factors associated with physical activity. The aim of this study was therefore to systematically review correlates of physical activity in children and adolescents with ID.
METHODS
The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Ovid MEDLINE, Ovid Embase, Web of Science, ERIC, CINAHL and PsycINFO were searched between 1 January 1990 and 29 February 2020 to identify English-language studies, which examined correlates of free-living physical activity in children and adolescents (0-19 years) with ID. Study quality was assessed. Correlates were analysed using a narrative synthesis and classified using the socioecological model as intrapersonal, interpersonal, organisational or environmental.
RESULTS
Fifteen studies published between 2010 and 2019 met the inclusion criteria and were included in the review. Forty-eight individual correlates were identified. Studies were predominantly focused on intrapersonal-level correlates. Of those correlates investigated in more than one study (n = 6), having better motor development was positively associated with physical activity. Inconsistent results were found for age and cardiorespiratory fitness. Sex, percentage body fat and body mass index were not correlated. No interpersonal-level, organisational-level or environmental-level correlates were included in more than one study.
CONCLUSIONS
To date, we have limited and inconclusive evidence about correlates of physical activity in children and adolescents with ID. Only when future studies unravel correlates and determinants, across all domains of the socioecological model, will the potential opportunities to improve health by increasing physical activity levels be achievable.
Topics: Adolescent; Body Mass Index; Cardiorespiratory Fitness; Child; Exercise; Humans; Intellectual Disability
PubMed: 33590605
DOI: 10.1111/jir.12811 -
The Lancet. Psychiatry Sep 2023People with intellectual disability show a high prevalence of behaviours that challenge. Clinical guidelines recommend that such behaviour should first be treated with... (Meta-Analysis)
Meta-Analysis
Non-pharmacological and pharmacological interventions for the reduction or prevention of topographies of behaviours that challenge in people with intellectual disabilities: a systematic review and meta-analysis of randomised controlled trials.
BACKGROUND
People with intellectual disability show a high prevalence of behaviours that challenge. Clinical guidelines recommend that such behaviour should first be treated with non-pharmacological interventions, but research suggests off-label pharmaceuticals are commonly used. We aimed to evaluate the efficacy of non-pharmacological and pharmacological interventions for topographies of behaviours that challenge drawn from randomised controlled trials (RCTs).
METHODS
In this systematic review and meta-analysis, we searched PsycINFO, MEDLINE, Embase, CINAHL, and CENTRAL databases for RCT studies assessing an intervention (pharmacological or non-pharmacological) for behaviours that challenge (self-injury behaviour, aggression, destruction of property, irritability, and a composite overall measure) in participants with intellectual disability. The primary aim was to assess the efficacy of non-pharmacological and pharmacological interventions on behaviours that challenge. Secondary aims were to evaluate how effects varied over time and whether intervention, methodological, and participant characteristics moderate efficacy. We extracted standard mean difference (SMD) effect sizes (Cohen's d) from eligible studies and meta-analysed the data using a series of random effects models and subgroup analyses. This study was registered with PROSPERO 2021, CRD4202124997.
FINDINGS
Of 11 912 reports identified, 82 studies were included. 42 (51%) studies assessed non-pharmacological interventions and 40 (49%) assessed pharmacological interventions. Across all studies, 4637 people with intellectual disability aged 1-84 years (mean age 17·2 years) were included. 2873 (68·2%) were male, 1339 (28·9%) were female, and for 425 (9·2%) individuals, data on gender were not available. Data on ethnicity were unavailable. Small intervention effects were found for overall behaviours that challenge at post-intervention (SMD -0·422, 95% CI -0·565 to -0·279), overall behaviours that challenge at follow-up (-0·324, -0·551 to -0·097), self-injury behaviour at post-intervention (-0·238, -0·453 to -0·023), aggression at post-intervention (-0·438, -0·566 to -0·309), and irritability at post-intervention (-0·255, -0·484 to -0·026). No significant differences between non-pharmacological and pharmacological interventions were found for any topography of behaviours that challenge (all p>0·05).
INTERPRETATION
A broad range of interventions for behaviours that challenge are efficacious with small effect sizes for people with intellectual disability. These findings highlight the importance of precision in the measurement of behaviours that challenge, and when operationalising intervention components and dosages.
FUNDING
Cerebra.
Topics: Female; Male; Humans; Adolescent; Intellectual Disability; Aggression; Self-Injurious Behavior; Databases, Factual; Ethnicity; Randomized Controlled Trials as Topic
PubMed: 37595996
DOI: 10.1016/S2215-0366(23)00197-9 -
Journal of Alzheimer's Disease : JAD 2023Improved health care for people with Down syndrome (DS) has resulted in an increase in their life expectancy therefore increasing comorbidities associated with... (Meta-Analysis)
Meta-Analysis
Diagnostic Sensitivity and Specificity of Cognitive Tests for Mild Cognitive Impairment and Alzheimer's Disease in Patients with Down Syndrome: A Systematic Review and Meta-Analysis.
BACKGROUND
Improved health care for people with Down syndrome (DS) has resulted in an increase in their life expectancy therefore increasing comorbidities associated with age-related problems in this population, the most frequent being Alzheimer's disease (AD). To date, several cognitive tests have been developed to evaluate cognitive changes related to the development of mild cognitive impairment (MCI) and AD in people with DS.
OBJECTIVE
Identify and evaluate available cognitive tests for the diagnosis of MCI and AD in people with DS.
METHODS
A systematic search of the Pubmed and PsycInfo databases was performed to identify articles published from January 1, 2000 and July 1, 2022. Keysearch terms were DS, AD or MCI, cognition, and assessment. Relevant studies assessing the diagnostic accuracy of cognitive tests for AD or MCI with standard clinical evaluation were extracted. Risk of bias was assessed using the QUADAS 2.
RESULTS
We identified 15 batteries, 2 intelligence scales, 14 memory tests, 11 executive, functioning tests, 11 motor and visuospatial functioning tests, 5 language tests, 3 attention tests, and 2 orientation tests. Analysis showed that the CAMCOG-DS present a fair to excellent diagnostic accuracy for detecting AD in patients with DS. However, for the diagnosis of MCI, this battery showed poor to good diagnostic accuracy.
CONCLUSION
The findings highlight important limitations of the current assessment available for the screening of mild cognitive impairment and AD in patients with DS and support the need for more clinical trials to ensure better screening for this highly at-risk population.
Topics: Humans; Alzheimer Disease; Down Syndrome; Cognitive Dysfunction; Cognition; Neuropsychological Tests; Sensitivity and Specificity
PubMed: 37522203
DOI: 10.3233/JAD-220991 -
Journal of Pediatric Surgery Sep 2022Emanuel Syndrome (ES), a rare chromosomal disorder caused by a supernumerary chromosome 22 derivative (der(22)t(11;22)), was identified in a fetus with congenital...
BACKGROUND
Emanuel Syndrome (ES), a rare chromosomal disorder caused by a supernumerary chromosome 22 derivative (der(22)t(11;22)), was identified in a fetus with congenital diaphragmatic hernia (CDH) at our fetal center. We aimed to identify a precedent for clinical care and patient outcomes to guide family decision-making.
METHODS
This non-funded and non-registered study queried the entire CDH Registry (CDHR) including >10,000 patients since 1995 and conducted a systematic literature review for patients with concomitant ES and CDH.
RESULTS
Literature review captured 12 citations and identified 9 patients with CDH+ES from over 400 known ES cases. Given the rarity of the disease and to reduce bias, there were no exclusion criteria aside from non-English language. Of these 9, two underwent surgical CDH repair with neither surviving. The CDHR identified 6 patients with ES, all reported after 2013 and prenatally diagnosed. Median estimated gestational age was 39 weeks (range 37-40) and median birth weight was 2.72 kg (range 2.4-3.4 kg). 3 patients died within the first few postnatal days; surgical repair was not offered due to "anomalies" and "pulmonary hypertension" in two and one family chose comfort measures. The other 3 patients underwent surgical repair, and 2 were supported with ECMO. Two patients survived to discharge, incurring surgical comorbidities associated with severe CDH including gastrostomy dependence, tracheostomy, and CDH recurrence.
CONCLUSIONS
ES patients with CDH have potential to tolerate repair and survive to discharge, however with significant additional morbidity combined with severe challenges inherent to ES. This represents the largest series of patients with CDH and ES to date.
LEVEL OF EVIDENCE
IV (Case series with no comparison group).
Topics: Chromosome Disorders; Cleft Palate; Extracorporeal Membrane Oxygenation; Heart Defects, Congenital; Hernias, Diaphragmatic, Congenital; Humans; Infant; Intellectual Disability; Muscle Hypotonia; Retrospective Studies
PubMed: 34865829
DOI: 10.1016/j.jpedsurg.2021.11.005