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1.
JAMA ; 331(14): 1205-1214, 2024 04 09.
Article in English | MEDLINE | ID: mdl-38592388

ABSTRACT

Importance: Several studies suggest that acetaminophen (paracetamol) use during pregnancy may increase risk of neurodevelopmental disorders in children. If true, this would have substantial implications for management of pain and fever during pregnancy. Objective: To examine the associations of acetaminophen use during pregnancy with children's risk of autism, attention-deficit/hyperactivity disorder (ADHD), and intellectual disability. Design, Setting, and Participants: This nationwide cohort study with sibling control analysis included a population-based sample of 2 480 797 children born in 1995 to 2019 in Sweden, with follow-up through December 31, 2021. Exposure: Use of acetaminophen during pregnancy prospectively recorded from antenatal and prescription records. Main Outcomes and Measures: Autism, ADHD, and intellectual disability based on International Classification of Diseases, Ninth Revision and International Classification of Diseases, Tenth Revision codes in health registers. Results: In total, 185 909 children (7.49%) were exposed to acetaminophen during pregnancy. Crude absolute risks at 10 years of age for those not exposed vs those exposed to acetaminophen were 1.33% vs 1.53% for autism, 2.46% vs 2.87% for ADHD, and 0.70% vs 0.82% for intellectual disability. In models without sibling control, ever-use vs no use of acetaminophen during pregnancy was associated with marginally increased risk of autism (hazard ratio [HR], 1.05 [95% CI, 1.02-1.08]; risk difference [RD] at 10 years of age, 0.09% [95% CI, -0.01% to 0.20%]), ADHD (HR, 1.07 [95% CI, 1.05-1.10]; RD, 0.21% [95% CI, 0.08%-0.34%]), and intellectual disability (HR, 1.05 [95% CI, 1.00-1.10]; RD, 0.04% [95% CI, -0.04% to 0.12%]). To address unobserved confounding, matched full sibling pairs were also analyzed. Sibling control analyses found no evidence that acetaminophen use during pregnancy was associated with autism (HR, 0.98 [95% CI, 0.93-1.04]; RD, 0.02% [95% CI, -0.14% to 0.18%]), ADHD (HR, 0.98 [95% CI, 0.94-1.02]; RD, -0.02% [95% CI, -0.21% to 0.15%]), or intellectual disability (HR, 1.01 [95% CI, 0.92-1.10]; RD, 0% [95% CI, -0.10% to 0.13%]). Similarly, there was no evidence of a dose-response pattern in sibling control analyses. For example, for autism, compared with no use of acetaminophen, persons with low (<25th percentile), medium (25th-75th percentile), and high (>75th percentile) mean daily acetaminophen use had HRs of 0.85, 0.96, and 0.88, respectively. Conclusions and Relevance: Acetaminophen use during pregnancy was not associated with children's risk of autism, ADHD, or intellectual disability in sibling control analysis. This suggests that associations observed in other models may have been attributable to familial confounding.


Subject(s)
Acetaminophen , Attention Deficit Disorder with Hyperactivity , Autistic Disorder , Intellectual Disability , Prenatal Exposure Delayed Effects , Child , Female , Humans , Pregnancy , Acetaminophen/adverse effects , Attention Deficit Disorder with Hyperactivity/chemically induced , Attention Deficit Disorder with Hyperactivity/epidemiology , Autistic Disorder/chemically induced , Autistic Disorder/epidemiology , Cohort Studies , Confounding Factors, Epidemiologic , Follow-Up Studies , Intellectual Disability/chemically induced , Intellectual Disability/epidemiology , Neurodevelopmental Disorders/chemically induced , Neurodevelopmental Disorders/epidemiology , Prenatal Exposure Delayed Effects/chemically induced , Prenatal Exposure Delayed Effects/epidemiology , Sweden/epidemiology
2.
J Neurodev Disord ; 16(1): 13, 2024 Mar 27.
Article in English | MEDLINE | ID: mdl-38539105

ABSTRACT

BACKGROUND: Global developmental delay or intellectual disability usually accompanies various genetic disorders as a part of the syndrome, which may include seizures, autism spectrum disorder and multiple congenital abnormalities. Next-generation sequencing (NGS) techniques have improved the identification of pathogenic variants and genes related to developmental delay. This study aimed to evaluate the yield of whole exome sequencing (WES) and neurodevelopmental disorder gene panel sequencing in a pediatric cohort from Ukraine. Additionally, the study computationally predicted the effect of variants of uncertain significance (VUS) based on recently published genetic data from the country's healthy population. METHODS: The study retrospectively analyzed WES or gene panel sequencing findings of 417 children with global developmental delay, intellectual disability, and/or other symptoms. Variants of uncertain significance were annotated using CADD-Phred and SIFT prediction scores, and their frequency in the healthy population of Ukraine was estimated. RESULTS: A definitive molecular diagnosis was established in 66 (15.8%) of the individuals. WES diagnosed 22 out of 37 cases (59.4%), while the neurodevelopmental gene panel identified 44 definitive diagnoses among the 380 tested patients (12.1%). Non-diagnostic findings (VUS and carrier) were reported in 350 (83.2%) individuals. The most frequently diagnosed conditions were developmental and epileptic encephalopathies associated with severe epilepsy and GDD/ID (associated genes ARX, CDKL5, STXBP1, KCNQ2, SCN2A, KCNT1, KCNA2). Additionally, we annotated 221 VUS classified as potentially damaging, AD or X-linked, potentially increasing the diagnostic yield by 30%, but 18 of these variants were present in the healthy population of Ukraine. CONCLUSIONS: This is the first comprehensive study on genetic causes of GDD/ID conducted in Ukraine. This study provides the first comprehensive investigation of the genetic causes of GDD/ID in Ukraine. It presents a substantial dataset of diagnosed genetic conditions associated with GDD/ID. The results support the utilization of NGS gene panels and WES as first-line diagnostic tools for GDD/ID cases, particularly in resource-limited settings. A comprehensive approach to resolving VUS, including computational effect prediction, population frequency analysis, and phenotype assessment, can aid in further reclassification of deleterious VUS and guide further testing in families.


Subject(s)
Autism Spectrum Disorder , Epilepsy , Intellectual Disability , Child , Humans , Intellectual Disability/epidemiology , Intellectual Disability/genetics , Intellectual Disability/diagnosis , Genetic Testing/methods , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/genetics , Autism Spectrum Disorder/complications , Retrospective Studies , Epilepsy/complications , Potassium Channels, Sodium-Activated/genetics , Nerve Tissue Proteins/genetics
3.
Article in English | MEDLINE | ID: mdl-38541298

ABSTRACT

Most of the studies on the cost of intellectual disability are limited to a healthcare perspective or cohorts composed of individuals where the etiology of the condition is a mixture of genetic and non-genetic factors. When used in policy development, these can impact the decisions made on the optimal allocation of resources. In our study, we have developed a static microsimulation model to estimate the healthcare, societal, and lifetime cost of individuals with familial intellectual disability, an inheritable form of the condition, to families and government. The results from our modeling show that the societal costs outweighed the health costs (approximately 89.2% and 10.8%, respectively). The lifetime cost of familial intellectual disability is approximately AUD 7 million per person and AUD 10.8 million per household. The lifetime costs to families are second to those of the Australian Commonwealth government (AUD 4.2 million and AUD 9.3 million per household, respectively). These findings suggest that familial intellectual disability is a very expensive condition, representing a significant cost to families and government. Understanding the drivers of familial intellectual disability, especially societal, can assist us in the development of policies aimed at improving health outcomes and greater access to social care for affected individuals and their families.


Subject(s)
Intellectual Disability , Humans , Intellectual Disability/epidemiology , Intellectual Disability/genetics , Cost of Illness , Australia/epidemiology , Delivery of Health Care , Health Care Costs
5.
Pediatrics ; 153(4)2024 Apr 01.
Article in English | MEDLINE | ID: mdl-38501189

ABSTRACT

OBJECTIVE: Our objectives with this study were to describe the frequency of selected cooccurring health conditions and individualized education program (IEP) services and post-high school transition planning for adolescents with autism spectrum disorder and identify disparities by sex, intellectual ability, race or ethnicity, and geographic area. METHODS: The study sample included 1787 adolescents born in 2004 who were identified as having autism through a health and education record review through age 16 years in 2020. These adolescents were part of a longitudinal population-based surveillance birth cohort from the Autism and Developmental Disabilities Monitoring Network from 2004 to 2020 in 5 US catchment areas. RESULTS: Attention deficit hyperactivity disorder (47%) and anxiety (39%) were the most common cooccurring health conditions. Anxiety was less commonly identified for those with intellectual disability than those without. It was also less commonly identified among Black adolescents compared with White or Hispanic adolescents. There was wide variation across Autism and Developmental Disabilities Monitoring Network sites in the provision of school-based IEP services. Students with intellectual disability were less likely to receive school-based mental health services and more likely to have a goal for postsecondary independent living skills compared with those without intellectual disability. A total of 37% of students did not participate in standardized testing. CONCLUSIONS: We identified disparities in the identification of cooccurring conditions and school-based IEP services, practices, and transition planning. Working with pediatric health and education providers, families, and adolescents with autism will be important to identify contributing factors and to focus efforts to reduce disparities in the supports and services adolescents with autism have access to and receive.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Intellectual Disability , Adolescent , Adult , Child , Humans , Young Adult , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/therapy , Autistic Disorder/epidemiology , Autistic Disorder/therapy , Ethnicity , Hispanic or Latino , Intellectual Disability/epidemiology , Intellectual Disability/therapy , Black or African American , White
6.
Child Care Health Dev ; 50(2): e13252, 2024 03.
Article in English | MEDLINE | ID: mdl-38520205

ABSTRACT

BACKGROUND: It is thought that physical health conditions start at a young age in people with profound intellectual and multiple disabilities (PIMD). Knowledge regarding the prevalence, associations and development of these physical health conditions could be used for purposes of prevention as well as appropriate care and support but is currently lacking. OBJECTIVE: The aim of this study is to gain insight into the prevalence of physical health conditions and associations between these conditions in young children with PIMD. METHODS: The study used cross-sectional data related to the physical health conditions of children with PIMD (n = 51, aged between 12 and 61 months). Data were collected in Belgium and in the Netherlands through a checklist filled in by primary caregiver(s). Physical health conditions were classified into categories by the 10th revision of the International Classification of Diseases and Related Health Problems (ICD-10) system. The number of physical health conditions and associations between them were analysed. The analysis focused on prevalence rates and associations represented by odds ratios (p < 0.05). A graphical model was estimated to represent dependencies and conditional dependencies between physical health conditions. RESULTS: We found a mean of 3.8 (range 1-8, SD 1.9) physical health conditions per child. Most of the physical health conditions were found in the ICD-10 chapter 'Nervous System', with hypotonia as the most frequent at 70.6%. Five significant large associations were found between spasticity-contractures (OR 9.54); circulatory system-contractures (OR 7.50); scoliosis-contractures (OR 10.25); hearing impairments-skin problems (OR 58.20) and obstipation-hypotonia (OR 19.98). CONCLUSION: This study shows that at a young age, multiple physical health conditions are present in children with PIMD. In addition, we found five associations between physical health conditions.


Subject(s)
Contracture , Disabled Persons , Intellectual Disability , Child , Humans , Child, Preschool , Infant , Prevalence , Cross-Sectional Studies , Muscle Hypotonia , Intellectual Disability/epidemiology
7.
J Appl Res Intellect Disabil ; 37(3): e13219, 2024 May.
Article in English | MEDLINE | ID: mdl-38485891

ABSTRACT

BACKGROUND: People with intellectual disabilities may experience frailty earlier than the general population. This scoping review aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of COVID-19 on frailty identification and management. METHOD: Databases were searched from January 2016 to July 2023 for studies that investigated frailty in individuals with intellectual disabilities. RESULTS: Twenty studies met the inclusion criteria. Frailty prevalence varied between 9% and 84%. Greater severity of intellectual disability, presence of Down syndrome, older age, polypharmacy, and group home living were associated with frailty. Multiagency working, trusted relationships and provision of evidence-based information may all be beneficial in frailty management. CONCLUSION: Frailty is common for people with intellectual disabilities and is best identified with measures specifically designed for this population. Future research should evaluate interventions to manage frailty and improve lives.


Subject(s)
Down Syndrome , Frailty , Intellectual Disability , Adult , Aged , Humans , Intellectual Disability/epidemiology , Intellectual Disability/therapy , Intellectual Disability/complications , Frailty/epidemiology , Frail Elderly , Down Syndrome/complications , Down Syndrome/epidemiology , Down Syndrome/therapy , Prevalence
8.
Transl Vis Sci Technol ; 13(2): 7, 2024 02 01.
Article in English | MEDLINE | ID: mdl-38334704

ABSTRACT

Objective: To investigate ocular development and the characteristics of visual function among children with cerebral palsy (CP) and intellectual disabilities in Beijing's Chaoyang District schools. Methods: A total of 160 children (320 eyes) with CP and intellectual disabilities, including 86 males and 74 females aged between 6 and 18 years old (median, 13.5 years), were included in this study. A total of 214 healthy children aged 6 to 18 years (median, 10 years) were recruited as a control group for visual function, including 116 males and 98 females. Subjective far vision, objective vision (electrophysiological sweep visual evoked potential), corrected vision, near stereopsis, ametropia, the anterior segment, and the fundus were examined. Results: A total of 232 eyes (76.32%) were ametropic among 304 eyes that could cooperate; 200 eyes (65.79%) were astigmatic, 16 eyes (5.26%) were hyperopic, and 120 eyes (39.47%) were myopic. A total of 64 children had strabismus (40%), and 24 had nystagmus (15%). The near stereopsis test showed that 72 children (64.29%) demonstrated 100″ and less. A total of 214 healthy children aged 6 to 18 years were recruited as a control group for visual function. There was a significant difference in visual functions between children with intellectual disabilities and those without (Z = -10.370; P < 0.001). Conclusions: The prevalence of abnormal visual function in children with CP and intellectual disability was significantly higher than that in healthy children. Among them, myopia is the main refractive error, and the correction rate was low. Translational Relevance: The electrical signals generated by stimulating the retina with black and white stripes are transmitted to the brain. Scanning electrophysiological devices can capture the activity of the cerebral cortex and convert it into an electroencephalogram. Scanning electrophysiological electrooculography is used to examine the objective vision of children with cerebral palsy.


Subject(s)
Cerebral Palsy , Intellectual Disability , Myopia , Refractive Errors , Child , Male , Female , Humans , Adolescent , Visual Acuity , Intellectual Disability/epidemiology , Beijing/epidemiology , Cerebral Palsy/complications , Cerebral Palsy/epidemiology , Evoked Potentials, Visual
9.
Mol Biol Rep ; 51(1): 276, 2024 Feb 05.
Article in English | MEDLINE | ID: mdl-38315301

ABSTRACT

BACKGROUND: Neurodevelopmental disorders are heterogeneous due to underlying multiple shared genetic pathways and risk factors. Intellectual disability, epilepsy and autism spectrum disorder phenotypes overlap which indicates the diverse effects of common genes. Recent studies suggested the probable contribution of CNTNAP2 gene polymorphisms to the comorbidity of these neurological conditions. METHODS AND RESULTS: This study was conducted to investigate the role of CNTNAP2 polymorphisms rs147815978 (G>T) and rs2710102 (A>G) as a risk factor for comorbidity of intellectual disability and epilepsy in a group of 345 individuals including 170 patients and 175 healthy controls recruited from various ethnic groups of Pakistani population. Our case-control study group was genotyped by tetra primer ARMS-PCR technique and results were analysed to know the effects of CNTNAP2 rs147815978 (G>T) and rs2710102 (A>G) polymorphisms in the group. The frequency of risk allele T (rs147815978) and risk allele G (rs2710102) for homozygous recessive genotypes (TT/GG) in our study group was 36.47% while odds ratios for risk allele T (rs147815978) was 5.45 (3.90-7.61: 95% CI, P = 0.000) and that for risk allele G (rs2710102) was 2.39 (1.76-3.24: 95% CI, P = 0.0001). Homozygous recessive genotypes (TT/GG) appeared only in cases and not in control group which indicated these as suspected risk genotypes and the significant association (p < 0.05%) of CNTNAP2 gene polymorphisms rs147815978 (G>T) and rs2710102 (A>G) with co-occurrence of intellectual disability and epilepsy phenotypes in our study group which is in HWE (χ2 = 174, P < 0.0001). Logistic regression analysis shows additive (p < 0.0001) and multiplicative (p < 0.001) models which confirms significant association of both the polymorphisms in our data, which are closely located on same haplotype (D' = - 0.168). CONCLUSIONS: We propose that CNTNAP2 rs147815978 (G>T) and rs2710102 (A>G) polymorphisms are possible risk loci for overlapping neurodevelopmental disorders in Pakistani population. We propose the role of a previously reported common SNP rs2710102 (A>G) with a rarely reported novel SNP rs147815978 (G>T) for CNTNAP2 gene association with neurodevelopmental disorders in our data. Our study has expanded the knowledge of CNTNAP2 gene polymorphisms as probable biomarkers for susceptibility of co-occurrence of intellectual disability and epilepsy phenotypes in Pakistani population. We hope that our study will open new horizons of CNTNAP2 gene variants research to cure the neurological conditions in Pakistani population where consanguinity is a tradition and prevalence of neurodevelopmental disorders has increased from 1 to 2% during last 5 years.


Subject(s)
Autism Spectrum Disorder , Epilepsy , Intellectual Disability , Membrane Proteins , Nerve Tissue Proteins , Humans , Alleles , Autism Spectrum Disorder/genetics , Biomarkers , Case-Control Studies , Comorbidity , Epilepsy/epidemiology , Epilepsy/genetics , Genetic Predisposition to Disease , Intellectual Disability/epidemiology , Intellectual Disability/genetics , Membrane Proteins/genetics , Nerve Tissue Proteins/genetics , Phenotype , Polymorphism, Single Nucleotide
10.
Article in German | MEDLINE | ID: mdl-38334785

ABSTRACT

Intellectual disability has a prevalence rate of approximately 1% of the population; in Germany, this is around 0.5-1 million people. The life expectancy of this group of people is reduced, with cancer being one of the most common causes of death (approx. 20%). Overall, the risk of cancer and mortality is increased compared to the general population.Certain genetic syndromes predispose to cancer in this vulnerable group, but associated comorbidities or lifestyle could also be risk factors for cancer. People with cognitive impairments are less likely to attend preventive check-ups, and challenges arise in medical care due to physical, communicative, and interactional characteristics. Optimized cooperation between clinical centers for people with disabilities and the respective cancer centers is required in order to tailor the processes to the individual.In Germany, there is a lack of data on the prevalence of cancer entities and the use and need for healthcare services. There is an urgent need to focus attention on cancer prevention, treatment, and research in the vulnerable and heterogeneous group of people with intellectual disabilities suffering from cancer in order to effectively counteract the increase in cancer-related deaths in this population group.The article summarizes specialist knowledge on cancer in people with an intellectual disability, identifies special features of treatment, presents care structures, and derives specific requirements for clinics and research.


Subject(s)
Intellectual Disability , Neoplasms , Humans , Intellectual Disability/diagnosis , Intellectual Disability/epidemiology , Intellectual Disability/genetics , Prevalence , Germany/epidemiology , Delivery of Health Care , Life Expectancy , Neoplasms/epidemiology , Neoplasms/genetics , Neoplasms/therapy
11.
Autism Res ; 17(3): 650-667, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38415400

ABSTRACT

Intellectual disability (ID) commonly co-occurs in children with autism. Although diagnostic criteria for ID require impairments in both cognitive and adaptive functioning, most population-based estimates of the frequency of co-occurring ID in children with autism-including studies of racial and ethnic disparities in co-occurring autism and ID-base the definition of ID solely on cognitive scores. The goal of this analysis was to examine the effect of including both cognitive and adaptive behavior criteria on estimates of co-occurring ID in a well-characterized sample of 2- to 5-year-old children with autism. Participants included 3264 children with research or community diagnoses of autism enrolled in the population-based Study to Explore Early Development (SEED) phases 1-3. Based only on Mullen Scales of Early Learning (MSEL) composite cognitive scores, 62.9% (95% confidence interval [CI]: 61.1, 64.7%) of children with autism were estimated to have co-occurring ID. After incorporating Vineland Adaptive Behavior Scales, Second Edition (VABS-II) composite or domains criteria, co-occurring ID estimates were reduced to 38.0% (95% CI: 36.2, 39.8%) and 45.0% (95% CI: 43.1, 46.9%), respectively. The increased odds of meeting ID criteria observed for non-Hispanic (NH) Black and Hispanic children relative to NH White children when only MSEL criteria were used were substantially reduced, though not eliminated, after incorporating VABS-II criteria and adjusting for selected socioeconomic variables. This study provides evidence for the importance of considering adaptive behavior as well as socioeconomic disadvantage when describing racial and ethnic disparities in co-occurring ID in epidemiologic studies of autism.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child Development Disorders, Pervasive , Intellectual Disability , Humans , Child , Child, Preschool , Intellectual Disability/complications , Intellectual Disability/epidemiology , Autistic Disorder/complications , Autistic Disorder/epidemiology , Autism Spectrum Disorder/complications , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/diagnosis , Adaptation, Psychological
12.
JAMA Pediatr ; 178(4): 384-390, 2024 Apr 01.
Article in English | MEDLINE | ID: mdl-38345807

ABSTRACT

Importance: Youth with intellectual and developmental disabilities (I/DD) are more likely to be placed in foster care than other youth. Examining the clinical and sociodemographic characteristics of youth with I/DD in the foster care system is critical for identifying disparities and understanding service needs. Objective: To produce a population-level analysis of youth with I/DD in foster care that examines differences in rates of foster care involvement based on race, ethnicity, age, and sex. Design, Setting, and Participants: This cross-sectional study involved all individuals with I/DD 21 years and younger enrolled in Medicaid through foster care in 2016 via data from Transformed Medicaid Statistical Information System (T-MSIS) Analytic Files (TAF) for all 50 US states and Washington, DC. As a key insurer of I/DD services and foster care, Medicaid claims offer a timely population-level analysis. Youth with I/DD were grouped into diagnostic subgroups: autism spectrum disorder (ASD) only, intellectual disability only, or ASD and ID. The data analysis took place from July 2022 to September 2023. Exposure: TAF data contain Medicaid enrollment information by month with a binary indicator of foster care involvement, and eligibility files identify race, ethnicity, age, and sex. Main Outcomes and Measures: The period prevalence of foster care involvement was determined among I/DD youth by diagnostic subgroups using an intersectional approach across race, ethnicity, age, and sex. Logistic regression examined associations between risk for foster care involvement and race, ethnicity, age, and sex. Results: A total of 39 143 youth with I/DD had foster care involvement in 2016. Black youth (adjusted odds ratio [aOR], 1.37; 95% CI, 1.28-1.47) and females (aOR, 1.18; 95% CI, 1.1-1.27) had increased likelihood for foster care involvement. The likelihood for foster care involvement increased with age in all groups relative to the age group 0 to 5 years old. Conclusions and Relevance: This study found that among youth with I/DD, Black youth and females faced higher risk for foster care involvement, and the likelihood of foster care involvement increased with age. There is an urgent need for research that focuses on addressing system-level factors that drive increased risk. Understanding the specific health needs of Black and female youth with I/DD is critical to ensure the formation, implementation, and monitoring of equitable delivery of health services.


Subject(s)
Autism Spectrum Disorder , Intellectual Disability , Child , United States/epidemiology , Humans , Female , Adolescent , Infant, Newborn , Infant , Child, Preschool , Autism Spectrum Disorder/epidemiology , Cross-Sectional Studies , Developmental Disabilities/epidemiology , Medicaid , Foster Home Care , Intellectual Disability/epidemiology
14.
J Intellect Disabil Res ; 68(6): 573-584, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38369907

ABSTRACT

BACKGROUND: Individuals with intellectual disabilities (IDs) and neurogenetic conditions (IDNDs) are at greater risk for comorbidities that may increase adverse outcomes for this population when they have coronavirus disease 2019 (COVID-19). The study aims are to examine the population-level odds of hospitalisation and mortality of privately insured individuals with COVID-19 with and without IDNDs IDs, controlling for sociodemographics and comorbid health conditions. METHODS: This is a retrospective, cross-sectional study of 1174 individuals with IDs and neurogenetic conditions within a population of 752 237 de-identified, privately insured, US patients diagnosed with COVID-19 between February 2020 and September 2020. Odds of hospitalisation and mortality among COVID-19 patients with IDNDs adjusted for demographic characteristics, Health Resources and Services Administration region, states with Affordable Care Act and number of comorbid health conditions were analysed. RESULTS: Patients with IDNDs overall had higher rates of COVID-19 hospitalisation than those without IDNDs (35.01% vs. 12.65%, P < .0001) and had higher rates of COVID-19 mortality than those without IDNDs (4.94% vs. .88%, P < .0001). Adjusting for sociodemographic factors only, the odds of being hospitalised for COVID-19 associated with IDNDs was 4.05 [95% confidence interval (CI) 3.56-4.61]. Adjusting for sociodemographic factors and comorbidity count, the odds of hospitalisation for COVID-19 associated with IDNDs was 1.42 (95% CI 1.25-1.61). The odds of mortality from COVID-19 for individuals with IDNDs adjusted for sociodemographic factors only was 4.65 (95% CI 3.47-6.24). The odds of mortality from COVID-19 for patients with IDNDs adjusted for sociodemographic factors and comorbidity count was 2.70 (95% CI 2.03-3.60). A major finding of the study was that even when considering the different demographic structure and generally higher disease burden of patients with IDNDs, having a IDND was an independent risk factor for increased hospitalisation and mortality compared with patients without IDNDs. CONCLUSIONS: Individuals with IDNDs had significantly higher odds of hospitalisation and mortality after adjusting for sociodemographics. Results remained significant with a slight attenuation after adjusting for sociodemographics and comorbidities. Adjustments for comorbidity count demonstrated a dose-response increase in odds of both hospitalisation and mortality, illustrating the cumulative effect of health concerns on COVID-19 outcomes. Together, findings highlight that individuals with IDNDs experience vulnerability for negative COVID-19 health outcomes with implications for access to comprehensive healthcare.


Subject(s)
COVID-19 , Comorbidity , Hospitalization , Intellectual Disability , Humans , COVID-19/mortality , COVID-19/epidemiology , United States/epidemiology , Male , Female , Intellectual Disability/epidemiology , Adult , Hospitalization/statistics & numerical data , Middle Aged , Retrospective Studies , Cross-Sectional Studies , Young Adult , Adolescent , Insurance, Health/statistics & numerical data , Aged , Child , Child, Preschool
15.
Sci Rep ; 14(1): 4341, 2024 02 22.
Article in English | MEDLINE | ID: mdl-38383720

ABSTRACT

The pandemic has had very negative effects on the mental health of the population, especially in people with autism spectrum disorders (ASD) and intellectual disability (ID). We analyzed whether social communication, quality of life, and anxiety explain changes in the emotional impact of the pandemic in 60 adults with ASD and ID. Correlations between the study variables were analyzed and subsequently a multiple regression analysis was performed. The results show that communication writing, leisure and well-being index, explain 31% of the dependent variable. The well-being index (PWI) contributes significantly to improving the fit of the model, as indicated by ß value. The remaining variables, communication writing and leisure socialization, do not contributed significantly to improving the fit of the model. Quality of life is the only variable that can explain changes in the emotional impact of the pandemic in the study population. This finding should guide future psychoeducational interventions and services for adults.


Subject(s)
Autism Spectrum Disorder , Intellectual Disability , Adult , Humans , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/psychology , Intellectual Disability/epidemiology , Intellectual Disability/psychology , Pandemics , Protective Factors , Quality of Life
16.
Am J Intellect Dev Disabil ; 129(2): 96-100, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38411240

ABSTRACT

There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships.


Subject(s)
Intellectual Disability , Mental Health , Adult , Child , Humans , Developmental Disabilities , Ontario/epidemiology , Intellectual Disability/epidemiology
17.
BMC Public Health ; 24(1): 406, 2024 02 08.
Article in English | MEDLINE | ID: mdl-38326795

ABSTRACT

BACKGROUND: The aim of the study was to identify the variables of the internal compensatory mechanisms that differentiate the body build and posture of people with Down syndrome (DS) from the intellectual disability (ID) population. It was assumed that gaining knowledge in the abovementioned aspect will allow for a better understanding of the limitation of the kinesthetic abilities of people with ID and DS and simultaneously enable to optimize the process of planning and interventions to improve physical activity in this population with the adequate use of theirs strengths in the biomechanical and morphofunctional systems. METHODS: The methodology of this systematic review was developed according to the PRISMA guidelines. A search of PubMed, EBSCO, Scopus databases was conducted to identify all studies on DS/ID and the body build and posture from 2003 to 2023. RESULTS: 395 articles were assessed to determine eligibility, while 22 studies met the inclusion criteria and were subjected to detailed analysis and assessment of their methodological quality. The differentiation of the body build and posture in DS population can be induced by both internal and external compensatory mechanisms. It is difficult to confirm the direct effect of the intrinsic variables that impact the body build and posture in the ID population, excluding people with DS. CONCLUSIONS: Compared to other ID, the intrinsic differences in the body build and posture in DS individuals were induced by gender, age, and level of ID. The tendency for diversity between DS and other ID populations in body build and posture may be determined by the presence of the third copy of chromosome 21 in DS group. Internal compensatory processes may be induced mainly by abnormalities in the structure of the cervical vertebrae and feet. IQ should not be used as the only variable that identifies the population of people with ID.


Subject(s)
Down Syndrome , Intellectual Disability , Humans , Intellectual Disability/epidemiology , Somatotypes , Exercise , Posture
18.
J Appl Res Intellect Disabil ; 37(3): e13215, 2024 May.
Article in English | MEDLINE | ID: mdl-38413378

ABSTRACT

BACKGROUND: Non-communicable diseases (NCDs), also known as chronic diseases, now constitute a major proportion of ill-health across most adult and older populations including in people with intellectual disability. The current paper is a comparative analysis of prevalence of NCDs across mid-aged and older-aged people with mild intellectual disability. METHOD: Comparative data comes from two cross-sectional surveys using similar methodology and timeframes. The analysis sample comprises mid-aged group (30-50 years, N = 291) and older-aged group (≥60 years, N = 391). RESULTS: People with mild intellectual disability start developing NCDs in early to mid-adulthood and increases with age. The mean number of NCDs in mid-aged group was 0.86 (SD, 0.84) compared to 3.82 in older group (SD, 2.67). CONCLUSION: There needs to be early identification and management of NCDs using relevant health promotion and preventative measures at optimal intervention points. The training of healthcare professionals needs improvement.


Subject(s)
Intellectual Disability , Multimorbidity , Adult , Middle Aged , Humans , Aged , Intellectual Disability/epidemiology , Cross-Sectional Studies , Prevalence , Australia/epidemiology
19.
J Appl Res Intellect Disabil ; 37(2): e13194, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38369315

ABSTRACT

BACKGROUND: The study reports the impact of the Covid-19 pandemic and lockdowns on jobs for people with intellectual disabilities and autism. The study focuses on the impact of the first and the fire-break lockdowns and the actions taken to support young people. METHOD: Data was collected from the cohort of young people currently working in Wales, and that received job coach support from the Engage to Change Project, on furlough arrangements, job retainment and job losses. Innovative initiatives to support young people are described. RESULTS: Review of the working situation during the pandemic was conducted for 184 jobs, evaluating the proportion of young people being furloughed or working remotely and compared with the general population in Wales. CONCLUSIONS: Supported employment agencies adapted their practice during the COVID-19 pandemic, offering new and innovative ways to support young people and facilitate their return to work.


Subject(s)
Autistic Disorder , COVID-19 , Intellectual Disability , Humans , Adolescent , COVID-19/epidemiology , Autistic Disorder/epidemiology , Pandemics , Intellectual Disability/epidemiology , Wales/epidemiology , Communicable Disease Control
20.
Res Dev Disabil ; 146: 104689, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38310732

ABSTRACT

BACKGROUND: People with intellectual disabilities often need assistance of some kind in their everyday life. Support needs can increase the risk of their victimization at the hands of professional and family caregivers. This paper explores the differences in caregiver victimization between participants living in residential care settings and those who are not. METHOD: A sample of 260 adults (59.2 % men) with an intellectual disability diagnosis were assessed using an adaptation of the Juvenile Victimization Questionnaire comparing prevalence, sum and variety scores. RESULTS: More than half of the sample (59.2 %) experienced some form of caregiver victimization throughout their lifetime, with physical abuse, verbal abuse, and neglect being the most frequently reported forms. Participants in residential care settings experienced significantly more caregiver victimization incidents and a broader range of victimization forms than their counterparts outside residential care. Significant differences were found based on the individuals' place of residence and gender. Details are provided on the last victimization incident, the perpetrator, the psychological and physical consequences of the victimization, and the reporting rates. CONCLUSIONS: This study outlines high rates of lifetime caregiver victimization, with those who live in residential care settings at particular risk. Further research is needed to gain a deeper understanding of the nuances of caregiver victimization and to prevent abuse in caregiving contexts.


Subject(s)
Bullying , Crime Victims , Intellectual Disability , Adult , Male , Humans , Female , Caregivers , Intellectual Disability/epidemiology , Hand , Upper Extremity
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