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American Journal on Intellectual and... Jul 2023Measurement of adaptive skills is important in the diagnosis, intervention planning, and progress monitoring of children with intellectual and developmental disabilities...
Measurement of adaptive skills is important in the diagnosis, intervention planning, and progress monitoring of children with intellectual and developmental disabilities (IDD). Thus, ensuring accurate measurement, including measurement invariance, across children with and without IDD is critical. In this study, we evaluate the measurement invariance using multigroup confirmatory factor analysis (MG-CFA) of the Vineland-3 Comprehensive Interview (CIF) across children ages 6-21 years with and without IDD (N = 1,192) using archival data. Results showed that the Vineland-3 CIF exhibits configural invariance but may show some metric non-invariance in children with and without IDD. Suggestions for using the Vineland-3 CIF in this population are provided and future research and measure development needs are discussed.
Topics: Humans; Child; Developmental Disabilities; Factor Analysis, Statistical; Psychometrics; Intellectual Disability
PubMed: 37470256
DOI: 10.1352/1944-7558-128.4.334 -
Pediatric Transplantation Dec 2023Historically, intellectual and developmental disability (IDD) has been considered an important factor in choosing potential recipients of organ transplants among many... (Review)
Review
BACKGROUND
Historically, intellectual and developmental disability (IDD) has been considered an important factor in choosing potential recipients of organ transplants among many transplant centers. This study evaluated the temporal changes at the national and regional levels in the proportion of heart transplantation in children with IDD.
METHODS
Children younger than 19 years in the United Network for Organ Sharing (UNOS) database who received heart transplants from 2010 to 2021 were included in this study. The patients were grouped into only definitive intellectual disability, both definitive intellectual and motor disability, only definitive motor disability, and no developmental disability. Multinomial logistic regressions were used to examine the proportion of heart transplants in each category for the whole cohort and each geographic transplant region.
RESULTS
There were 4273 pediatric heart transplant recipients included in the study. From 2010 to 2021, the percentages of pediatric heart transplants increased from 3.8% (95% CI, 0.01-0.05) to 5.8% (95% CI, 0.03-0.08) in children with only definitive intellectual disability (OR 0.07; 95% CI, 0.02-0.1, p < .002), from 3.4% (95% CI, 0.01-0.05) to 6.6% (95% CI, 0.04-0.09) in children with both definitive intellectual disability and motor disability (OR 0.09; 95% CI, 0.05-0.13, p < .001), and from 5.2% (95% CI, 0.02-0.07) to 8.3% (95% CI, 0.05-0.1) in children with only definitive motor disability (OR 0.06; 95% CI, 0.02-0.09, p < .002). There were several regional differences in the proportion of children with intellectual and developmental disabilities who received heart transplants.
CONCLUSION
There is increasing inclusion of children diagnosed with intellectual and developmental disabilities in heart transplantation. A review of the current allocation policies may address the marked geographic variations found in this study.
Topics: Child; Humans; Developmental Disabilities; Intellectual Disability; Disabled Persons; Motor Disorders; Heart Transplantation
PubMed: 37842949
DOI: 10.1111/petr.14620 -
American Journal of Preventive Medicine Sep 2020Postpartum health care among women with intellectual and developmental disabilities has not been well studied. This study uses administrative claims to compare...
INTRODUCTION
Postpartum health care among women with intellectual and developmental disabilities has not been well studied. This study uses administrative claims to compare postpartum outpatient visits among women with and without intellectual and developmental disabilities.
METHODS
Massachusetts All Payers Claims Database 2012-2015 was used to identify women with intellectual and developmental disabilities and a live birth during 2012-2014, matched by infant birth year to 3 women without intellectual and developmental disabilities. Women were followed up for 1 year after delivery. Analyses were conducted in 2019. Poisson regression compared guideline-concordant postpartum and other outpatient visits during the early (21-56 days after delivery) and late (57-365 days after delivery) periods. Types of nonpostpartum care visits were examined.
RESULTS
Overall, 962 and 2,886 women with and without intellectual and developmental disabilities, respectively, comprised the sample. Among women with intellectual and developmental disabilities, 23.9% had a postpartum visit in the early and 33.3% in the late postpartum periods, compared with 25.2% and 32.1% of women without intellectual and developmental disabilities who had visits in the early and late postpartum periods, respectively (p=0.49, 0.59). Women with intellectual and developmental disabilities were more likely to have other outpatient visits than those without intellectual and developmental disabilities, both in the early (63.1% vs 40.3%, adjusted RR=1.42, 95% CI=1.28, 1.58, p<0.001) and late (94.2% vs 82.3%, RR=1.11, 95% CI=1.08, 1.14, p=0.008) postpartum periods. Ancillary services, home health services, and alcohol/drug-related visits were much more common among women with intellectual and developmental disabilities.
CONCLUSIONS
Women with intellectual and developmental disabilities are equally likely to receive guideline-concordant postpartum visits and more likely to have other outpatient visits than other women. Further research is needed to evaluate visit quality and identify best practices to support mothers with intellectual and developmental disabilities during the postpartum period.
Topics: Child; Delivery of Health Care; Developmental Disabilities; Female; Humans; Massachusetts; Postpartum Period; Pregnancy; Pregnancy Complications
PubMed: 32605865
DOI: 10.1016/j.amepre.2020.03.011 -
Annals of Surgical Oncology Feb 2024Individuals with intellectual and developmental disabilities may face barriers in accessing healthcare, including cancer screening and detection services. We sought to...
BACKGROUND
Individuals with intellectual and developmental disabilities may face barriers in accessing healthcare, including cancer screening and detection services. We sought to assess the association of intellectual and developmental disabilities (IDD) with breast cancer screening rates.
METHODS
Data from 2018 to 2020 was used to identify screening-eligible individuals from Medicare Standard Analytic Files. Adults aged 65-79 years who did not have a previous diagnosis of breast cancer were included. Multivariable regression was used to analyze the differences in breast cancer screening rates among individuals with and without IDD.
RESULTS
Among 9,383,349 Medicare beneficiaries, 11,265 (0.1%) individuals met the criteria for IDD. Of note, individuals with IDD were more likely to be non-Hispanic White (90.5% vs. 87.3%), have a Charlson Comorbidity Index score ≤ 2 (66.2% vs. 85.5%), and reside in a low social vulnerability index neighborhood (35.7% vs. 34.4%). IDD was associated with reduced odds of undergoing breast cancer screening (odds ratio (OR) 0.77, 95% confidence interval (CI) 0.74-0.80; p < 0.001). Breast cancer screening rates in individuals with IDD were further influenced by social vulnerability and belonging to a racial/ethnic minority.
CONCLUSIONS
Individuals with IDD may face additional barriers to breast cancer screening. The combination of IDD and social vulnerability placed patients at particularly high risk of not being screened for breast cancer.
Topics: Adult; Child; Humans; Aged; United States; Female; Breast Neoplasms; Ethnicity; Early Detection of Cancer; Developmental Disabilities; Medicare; Minority Groups
PubMed: 37857986
DOI: 10.1245/s10434-023-14425-z -
Annual Review of Genomics and Human... Aug 2020Our ability to make accurate and specific genetic diagnoses in individuals with severe developmental disorders has been transformed by data derived from genomic... (Review)
Review
Our ability to make accurate and specific genetic diagnoses in individuals with severe developmental disorders has been transformed by data derived from genomic sequencing technologies. These data reveal both the patterns and rates of different mutational mechanisms and identify regions of the human genome with fewer mutations than would be expected. In outbred populations, the most common identifiable cause of severe developmental disorders is de novo mutation affecting the coding region in one of approximately 500 different genes, almost universally showing constraint. Simply combining the location of a de novo genomic event with its predicted consequence on the gene product gives significant diagnostic power. Our knowledge of the diversity of phenotypic consequences associated with comparable diagnostic genotypes at each locus is improving. Computationally useful phenotype data will improve diagnostic interpretation of ultrarare genetic variants and, in the long run, indicate which specific embryonic processes have been perturbed.
Topics: Child; Developmental Disabilities; Genetic Markers; Genome, Human; Genomics; Humans; Mutation
PubMed: 32421356
DOI: 10.1146/annurev-genom-120919-082329 -
Methods in Molecular Biology (Clifton,... 2021Analysis of cancer and RASopathy genetic databases reveals that ~19% of all cancer cases and ~4% of developmental disorders contain Ras mutations. Ras isoform and... (Review)
Review
Analysis of cancer and RASopathy genetic databases reveals that ~19% of all cancer cases and ~4% of developmental disorders contain Ras mutations. Ras isoform and mutation variants differentially contribute to these diseases and provide an opportunity for deeper understanding of Ras function. The putative mechanisms underpinning these differences, new approaches that are being applied, and some of the key questions and challenges that remain are discussed.
Topics: Developmental Disabilities; Humans; Mutation; Neoplasms; ras Proteins
PubMed: 33977468
DOI: 10.1007/978-1-0716-1190-6_1 -
Current Opinion in Psychiatry Mar 2020People with intellectual and developmental disability (IDD) commonly exhibit behaviors that present challenges to their parents, caregivers, and teachers.... (Review)
Review
PURPOSE OF REVIEW
People with intellectual and developmental disability (IDD) commonly exhibit behaviors that present challenges to their parents, caregivers, and teachers. Mindfulness-based practices and programs have emerged as a viable alternative to current interventions for such behaviors and the stress faced by their caregivers. This review addresses publications between 2018 and 2019 that examined the effectiveness of mindfulness-based practices and programs for people living with IDD.
RECENT FINDINGS
Individuals with IDD can learn mindfulness practices to self-manage their aggressive and destructive behaviors. Individual practices and group-based programs continue to show that mindfulness approaches are effective for this population. Randomized controlled trials indicate that comprehensive mindfulness-based programs (e.g., mindfulness-based stress reduction, MYmind, and mindfulness-based positive behavior support) are effective for enhancing the quality of life of people living with IDD.
SUMMARY
Research supports the use of informal mindfulness practices for challenging behaviors of people with IDD. Formal mindfulness-based programs continue to be evaluated for their effectiveness across different populations, cultures, levels of IDD, components of the program, and length of training. The research literature on mindfulness is still in the early stages of development and much work remains.
Topics: Developmental Disabilities; Humans; Intellectual Disability; Mindfulness; Problem Behavior; Quality of Life; Self-Control
PubMed: 31725422
DOI: 10.1097/YCO.0000000000000570 -
Journal of Neurodevelopmental Disorders Sep 2021Transmission of SARS-CoV-2 in schools primarily for typically developing children is rare. However, less is known about transmission in schools for children with...
BACKGROUND
Transmission of SARS-CoV-2 in schools primarily for typically developing children is rare. However, less is known about transmission in schools for children with intellectual and developmental disabilities (IDD), who are often unable to mask or maintain social distancing. The objectives of this study were to determine SARS-CoV-2 positivity and in-school transmission rates using weekly screening tests for school staff and students and describe the concurrent deployment of mitigation strategies in six schools for children with IDD.
METHODS
From November 23, 2020, to May, 28, 2021, weekly voluntary screening for SARS-CoV-2 with a high sensitivity molecular-based saliva test was offered to school staff and students. Weekly positivity rates were determined and compared to local healthcare system and undergraduate student screening data. School-based transmission was assessed among participants quarantined for in-school exposure. School administrators completed a standardized survey to assess school mitigation strategies.
RESULTS
A total of 59 students and 416 staff participated. An average of 304 school staff and students were tested per week. Of 7289 tests performed, 21 (0.29%) new SARS-CoV-2 positive cases were identified. The highest weekly positivity rate was 1.2% (n = 4) across all schools, which was less than community positivity rates. Two cases of in-school transmission were identified, each among staff, representing 2% (2/103) of participants quarantined for in-school exposure. Mitigation strategies included higher than expected student mask compliance, reduced room capacity, and phased reopening.
CONCLUSIONS
During 24 weeks that included the peak of the COVID-19 pandemic in winter 2020-21, we found lower rates of SARS-CoV-2 screening test positivity among staff and students of six schools for children with IDD compared to community rates. In-school transmission of SARS-CoV-2 was low among those quarantined for in-school exposure. However, the impact of the emerging SARS-CoV-2 Delta variant on the effectiveness of these proven mitigation strategies remains unknown.
TRIAL REGISTRATION
Prior to enrollment, this study was registered at ClinicalTrials.gov on September 25, 2020, identifier NCT04565509 , titled Supporting the Health and Well-being of Children with Intellectual and Developmental Disability During COVID-19 Pandemic.
Topics: COVID-19; Child; Developmental Disabilities; Humans; Pandemics; SARS-CoV-2; Schools
PubMed: 34465306
DOI: 10.1186/s11689-021-09376-z -
FP Essentials Nov 2021Gross motor development in infants and children, including loss of cerebral neuromotor maturational markers (ie, primitive reflexes) and achievement of motor...
Gross motor development in infants and children, including loss of cerebral neuromotor maturational markers (ie, primitive reflexes) and achievement of motor developmental milestones, follows a predictable sequence as the central nervous system matures. Because of this predictability, routine well-child visits provide an opportunity to assess development and identify motor delays through physical examination and screening with standardized tools. Family physicians are well suited to evaluate for risk factors that may adversely affect motor development, including review of the medical and social history of the child and the parents or caregivers for such factors. After a gross motor delay is identified, the physician should determine the likely cause of the delay, identify any anatomic etiology, and assess for features that may require further evaluation. This may include laboratory tests, imaging, or referral to a subspecialist. The patient then should be referred for early intervention.
Topics: Child; Child Development; Developmental Disabilities; Humans; Infant; Motor Skills Disorders
PubMed: 34709024
DOI: No ID Found -
Journal of the American Academy of... Oct 2023Screening for emotional, behavioral, and developmental disorders is generally considered to be a valuable activity in the child and youth developmental and mental health...
Screening for emotional, behavioral, and developmental disorders is generally considered to be a valuable activity in the child and youth developmental and mental health service sectors. The premise is that screening allows for early identification, which in turn allows for early intervention, which in turn leads to better long-term outcomes. While the hypothesized causal chain from screening to outcomes may seem long, the evidence base to support this aspiration is growing. In this issue of the Journal, the article by Rah et al. provides an important piece of the puzzle to support screening for developmental disorders in early childhood in particular and has a number of important lessons for the field.
Topics: Child; Adolescent; Humans; Child, Preschool; Developmental Disabilities; Emotions; Outcome Assessment, Health Care
PubMed: 36958406
DOI: 10.1016/j.jaac.2023.03.009