Inaugural annual special section of the intellectual and developmental disabilities research centers: developmental cognitive neuroscience and neurodevelopmental disorders.
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ABSTRACT:
SUBMITTER: Jeste SS
PROVIDER: S-EPMC6292047 | biostudies-literature | 2018 Dec
REPOSITORIES: biostudies-literature
Publications
Inaugural annual special section of the intellectual and developmental disabilities research centers: developmental cognitive neuroscience and neurodevelopmental disorders.
Jeste Shafali Spurling SS Nelson Charles A CA
Journal of neurodevelopmental disorders 20181213 1
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Project description:"Lifelong Learning with Friends" provides diversity training to college students by having them learn science alongside adults with intellectual and developmental disabilities (IDDs). Volunteers showed increased interest in IDD-focused research, social interaction, and advocacy.
| S-EPMC10263300 | biostudies-literature
Project description:Disruptions in the gene encoding methyl-CpG binding protein 2 (MECP2) underlie complex neurodevelopmental disorders including Rett Syndrome (RTT), MECP2 duplication disorder, intellectual disabilities, and autism. Significant progress has been made on the molecular and cellular basis of MECP2-related disorders providing a new framework for understanding how altered epigenetic landscape can derail the formation and refinement of neuronal circuits in early postnatal life and proper neurological function. This review will summarize selected major findings from the past years and particularly highlight the integrated and multidisciplinary work done at eight NIH-funded Intellectual and Developmental Disabilities Research Centers (IDDRC) across the US. Finally, we will outline a path forward with identification of reliable biomarkers and outcome measures, longitudinal preclinical and clinical studies, reproducibility of results across centers as a synergistic effort to decode and treat the pathogenesis of the complex MeCP2 disorders.
| S-EPMC8025698 | biostudies-literature
Project description:ImportanceYouth 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.ObjectiveTo 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 participantsThis 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.ExposureTAF 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 measuresThe 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.ResultsA 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 relevanceThis 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.
| S-EPMC10862267 | biostudies-literature
Project description:IntroductionPostpartum 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.MethodsMassachusetts 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.ResultsOverall, 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.ConclusionsWomen 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.
| S-EPMC8204383 | biostudies-literature
Project description:Since the arrival of the novel coronavirus, recommendations for public masking have emerged to decrease infection rates. For a variety of reasons, tolerating wearing a mask is challenging for many individuals with intellectual and developmental disabilities (IDDs). Therefore, we evaluated behavioral strategies to promote compliance with wearing a mask with six hospitalized individuals diagnosed with IDDs. One participant was compliant with wearing the mask for extended durations during baseline while engaging in various activities (e.g., academics, leisure). For the other five individuals, engagement in activities alone was ineffective. Blocking mask removal, reinforcement for mask wearing, and noncontingent access to preferred activities or competing stimuli were then evaluated using a changing-criterion design in which the duration participants were required to tolerate the mask gradually increased. Increases in compliance with mask wearing were achieved with all participants; however, the terminal duration was attained for only four of the five individuals.Supplementary informationThe online version contains supplementary material available at 10.1007/s40617-021-00583-7.
| S-EPMC8204602 | biostudies-literature
Project description:Under-screening for cancer may contribute to a greater disease burden in individuals with intellectual and developmental disabilities (IDD) as their life expectancy increases. In 2008, the province of Ontario launched Canada's first population-based colorectal cancer screening program. Our objectives were to compare the proportions of Ontarians with and without IDD who have undergone colorectal cancer screening and to examine factors associated with screening uptake among Ontarians with IDD. Records for Ontario residents 50-64 years of age were linked across various administrative health and social services datasets to identify individuals with IDD and to select a random sample of the age-equivalent Ontario population without IDD as a comparison group. Logistic regression models were fit to examine the odds of screening uptake among individuals with IDD while controlling for age, sex, urban or rural residence, neighbourhood income quintile, expected use of health care resources, and being enrolled with or seeing a physician in a patient enrolment model (any of several primary care practice models designed to improve patient access and quality of care in Ontario), and to examine the association between these variables and colorectal cancer screening in the IDD population. The odds of having had a fecal occult blood test in the previous two years and being up-to-date with colorectal tests were 32% and 46% lower, respectively, for Ontarians with IDD compared to those without IDD. Being older, female, having a greater expected use of health care resources, and being enrolled with or seeing a physician in a primary care patient enrolment model were all significantly associated with higher odds of having been screened for colorectal cancer in the IDD population. These findings underscore the need for targeted interventions aimed at making colorectal cancer screening more equitable.
| S-EPMC4331499 | biostudies-other
Project description:ImportanceSmall, geographically limited studies report that people with intellectual and developmental disabilities (IDD) have increased risk for serious pregnancy-related and birth-related challenges, including preeclampsia, preterm birth, and increased anxiety and depression, than their peers. United States-based population-level data among people with IDD are lacking.ObjectivesTo identify perinatal and postpartum outcomes among a national, longitudinal sample of people with IDD enrolled in public health insurance, compare subgroups of people with IDD, and compare outcomes among people with IDD with those of peers without IDD.Design, setting, and participantsThis retrospective cohort study used national Medicaid claims from January 1, 2008, to December 31, 2019, for 55 440 birthing people with IDD and a random sample of 438 557 birthing people without IDD. Medicaid funds almost half of all births and is the largest behavioral health insurer in the US, covering a robust array of services for people with IDD. Statistical analysis was performed from July 2023 to June 2024.ExposurePeople who had a documented birth in Medicaid during the study years.Main outcome and measuresPerinatal outcomes were compared across groups using univariate and multivariate logistic regression. The probability of postpartum anxiety and depression was estimated using Kaplan-Meier and Cox proportional hazards regression.ResultsThe study sample included 55 440 birthing people with IDD (including 41 854 with intellectual disabilities [ID] and 13 586 with autism; mean [SD] age at first delivery, 24.9 [6.7] years) and a random sample of 438 557 birthing people without IDD (mean [SD] age at first delivery, 26.4 [6.3] years). People with IDD were younger at first observed delivery, had a lower prevalence of live births (66.6% vs 76.7%), and higher rates of obstetric conditions (gestational diabetes, 10.3% vs 9.9%; gestational hypertension, 8.7% vs 6.1%; preeclampsia, 6.1% vs 4.4%) and co-occurring physical conditions (heart failure, 1.4% vs 0.4%; hyperlipidemia, 5.3% vs 1.7%; ischemic heart disease, 1.5% vs 0.4%; obesity, 16.3% vs 7.4%) and mental health conditions (anxiety disorders, 27.9% vs 6.5%; depressive disorders, 32.1% vs 7.5%; posttraumatic stress disorder, 9.5% vs 1.2%) than people without IDD. The probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) was significantly higher among autistic people compared with people with ID only and people without IDD.Conclusions and relevanceIn this retrospective cohort study, people with IDD had a younger mean age at first delivery, had lower prevalence of live births, and had poor obstetric, mental health, and medical outcomes compared with people without IDD, pointing toward a need for clinician training and timely delivery of maternal health care. Results highlight needed reproductive health education, increasing clinician knowledge, and expanding Medicaid to ensure access to care for people with IDD.
| S-EPMC11327882 | biostudies-literature
Project description:BackgroundWomen with intellectual and developmental disabilities (IDD) face increased risk of adverse maternal pregnancy outcomes, yet less is known about infant outcomes.ObjectivesTo examine birth outcomes of infants born to mothers with IDD and assess associations with demographics and IDD-type.MethodsWe used data from the Big Data for Little Kids project, which links Wisconsin birth records to Medicaid claims for live births covered by Medicaid from 2007 to 2016. We identified IDD using maternal prepregnancy Medicaid claims and ran Poisson regression (with a log link function) with robust variance clustered by mother to compare prevalence of outcomes between singleton births with and without mothers with IDD. We adjusted the associations for demographic factors and estimated prevalence ratios (PR) as the effect measure. We assessed outcomes by IDD-type (intellectual disability, genetic conditions, cerebral palsy, and autism spectrum disorder) to explore differences by categories of IDD.ResultsOf 267,395 infants, 1696 (0.6%) had mothers with IDD. A greater percentage of infants with mothers with IDD were born preterm (12.8% vs 7.8%; PR 1.64, 95% confidence interval [CI] 1.42, 1.89), small for gestational age (8.5% vs 5.4%; PR 1.42, 95% CI 1.25, 1.61), and died within 12 months of birth (3.2% vs 0.7%; PR 4.93, 95% CI 3.73, 6.43) compared to infants of mothers without IDD. Prevalence ratios were robust to adjustment for demographics factors. Estimates did not meaningfully differ when comparing different IDD-types.ConclusionsA greater porportion of infants born to mothers with IDD who were covered by Medicaid had poor outcomes compared to other infants. Prevalence of poor infant outcomes was greater for mothers with IDD even after accounting for demographic differences. It is imperative to understand why infants of mothers with IDD are at greater risk so interventions and management can be developed.
| S-EPMC8545714 | biostudies-literature
Project description:Epilepsy is common in people with intellectual and developmental disabilities (IDD). In adulthood, patients with IDD and epilepsy (IDD-E) have neurologic, psychiatric, medical, and social challenges compounded by fragmented and limited care. With increasing neurologic disability, there is a higher frequency of epilepsy, especially symptomatic generalized and treatment-resistant epilepsies. The causes of IDD-E are increasingly recognized to be genetic based on chromosomal microarray analysis to identify copy number variants, gene panels (epilepsy, autism spectrum disorder, intellectual disability), and whole-exome sequencing. A specific genetic diagnosis may guide care by pointing to comorbid disorders and best therapy. Therapy to control seizures should be individualized, with drug selection based on seizure types, epilepsy syndrome, concomitant medications, and comorbid disorders. There are limited comparative antiepileptic drug data in the IDD-E population. Vagus nerve and responsive neural stimulation therapies and resective surgery should be considered. Among the many comorbid disorders that affect patients with IDD-E, psychiatric and sleep disorders are common but often unrecognized and typically not treated. Transition from holistic and coordinated pediatric to adult care is often a vulnerable period. Communication among adult health care providers is complex but essential to ensure best care when these patients are seen in outpatient, emergency room, and inpatient settings. We propose specific recommendations for minimum care standards for people with IDD-E.
| S-EPMC4631073 | biostudies-literature
Project description:ObjectivesAdults with intellectual or developmental disabilities (IDD) face substantial barriers to accessing high-quality, patient-centered care. This paper describes the development and evolution of the Freeman Center, an integrated, interdisciplinary center developed using feedback from adults with IDD and their family members.MethodsWe evaluated the reach of the Freeman Center services and described the patient population.ResultsAs of November, 2022, 1068 patients were seen at the Freeman Center. These patients represent about 5 % of all people with IDD in Hamilton County Ohio, where the Freeman Center is located. On average in 2022, the Freeman Center provided approximately 380 primary care visits, 47 psychiatry visits, and 85 combined primary care and psychiatry service visits per month.ConclusionsPatient demographic characteristics are largely consistent with the general population of Hamilton County, indicating patients are representative of the county the clinic primarily serves. Further work is needed to evaluate patient outcomes at the Freeman Center.
| S-EPMC11657795 | biostudies-literature