-
The American Journal of Occupational... 2020Adults with intellectual and developmental disabilities (IDD) are twice as likely as their peers without disabilities to have had a physical exam in the past year;... (Review)
Review
IMPORTANCE
Adults with intellectual and developmental disabilities (IDD) are twice as likely as their peers without disabilities to have had a physical exam in the past year; however, as a result of challenging behavior during office visits, they are significantly less likely to have received recommended health screenings. Challenging behaviors in clinical settings have been identified as a barrier to providing adequate care for this population.
OBJECTIVE
This scoping review examined the within-session effects of multisensory environments (MSEs) on people with IDD to determine the clinical utility of MSEs for this population.
DATA SOURCES
Studies published between January 1, 2000, and August 1, 2018, were identified using Summon and Google Scholar.
STUDY SELECTION
Studies were included in the review if they systematically collected and reported data on within-session effects of an MSE intervention on people with IDD.
FINDINGS
Thirteen studies met criteria for this review: 4 with Level I evidence, 2 with Level II evidence, 3 with Level III evidence, and 4 with Level IV evidence. Studies examined the effects of MSEs on maladaptive behaviors, positive behaviors, distress and discomfort, activity and alertness states, and cost of care for people with IDD.
CONCLUSION AND RELEVANCE
Preliminary support was found for the use of MSEs in clinical settings to reduce anxiety and challenging behaviors in patients with IDD during clinical care. Further research is needed to determine the efficacy of MSEs for producing the effects described in this review.
WHAT THIS ARTICLE ADDS
The findings support the potential of MSEs as a tool that occupational therapy practitioners can use to support their clients with IDD who have sensory sensitivities in clinical settings. This article also highlights a multidisciplinary approach whereby medical providers and occupational therapy practitioners could work together in nontraditional ways to support this population.
Topics: Adult; Child; Developmental Disabilities; Disabled Persons; Humans; Intellectual Disability; Occupational Therapy
PubMed: 32078517
DOI: 10.5014/ajot.2020.037267 -
Journal of Intellectual Disability... May 2022Due to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery...
BACKGROUND
Due to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery during the COVID-19 pandemic may impact people with IDD differently than others. For community and hospital-based services, this study describes the proportion of adults with and without IDD who used health care in the year pre-COVID-19 and the first year of the pandemic.
METHODS
This retrospective cohort study used linked health administrative databases to identify adults aged 18-105 years with and without IDD using unique encoded identifiers. Counts and proportions of adults who used health care services were reported for the pre-COVID-19 year (16 March 2019 to 14 March 2020) and the first COVID-19 year (15 March 2020 to 15 March 2021).
RESULTS
Across services, the proportion of adults who used services was lower during the first COVID-19 year compared with the year prior, except for virtual physician visits that increased markedly for people with and without IDD. While the proportion of adults who used services was higher for those with IDD compared with those without IDD for both years, differences were greatest for mental health emergency visits and hospitalisations; adults with IDD were 6.3 to 10.9 times more likely to use these services than others with no IDD during the pandemic.
CONCLUSIONS
During the first COVID-19 year in Ontario, Canada, service use decreased for all service types, except for virtual physician visits. In both years, adults with IDD remained more likely to use services than other adults, with the largest differences in use of mental health hospitalisations and mental health emergency department visits.
Topics: Adult; COVID-19; Child; Delivery of Health Care; Developmental Disabilities; Hospitals; Humans; Intellectual Disability; Ontario; Pandemics; Retrospective Studies
PubMed: 35353400
DOI: 10.1111/jir.12929 -
Genetics in Medicine : Official Journal... Mar 2021Genetic testing is routine practice for individuals with unexplained developmental disabilities and multiple congenital anomalies. However, current testing pathways can...
PURPOSE
Genetic testing is routine practice for individuals with unexplained developmental disabilities and multiple congenital anomalies. However, current testing pathways can be costly and time consuming, and the diagnostic yield low. Genome-wide sequencing, including exome sequencing (ES) and genome sequencing (GS), can improve diagnosis, but at a higher cost. This study aimed to assess the cost-effectiveness of genome-wide sequencing in Ontario, Canada.
METHODS
A cost-effectiveness analysis was conducted using a discrete event simulation from a public payer perspective. Six strategies involving ES or GS were compared. Outcomes reported were direct medical costs, number of molecular diagnoses, number of positive findings, and number of active treatment changes.
RESULTS
If ES was used as a second-tier test (after the current first-tier, chromosomal microarray, fails to provide a diagnosis), it would be less costly and more effective than standard testing (CAN$6357 [95% CI: 6179-6520] vs. CAN$8783 per patient [95% CI: 2309-31,123]). If ES was used after standard testing, it would cost an additional CAN$15,228 to identify the genetic diagnosis for one additional patient compared with standard testing. The results remained robust when parameters and assumptions were varied.
CONCLUSION
ES would likely be cost-saving if used earlier in the diagnostic pathway.
Topics: Abnormalities, Multiple; Child; Cost-Benefit Analysis; Developmental Disabilities; Humans; Ontario; Exome Sequencing
PubMed: 33110268
DOI: 10.1038/s41436-020-01012-w -
Community Mental Health Journal Aug 2024Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during...
Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.
Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.
Topics: Humans; Developmental Disabilities; Intellectual Disability; Adolescent; Young Adult; Male; Female; Transition to Adult Care; Mental Health Services; Mental Disorders; Qualitative Research; Health Services Accessibility; Adult; Stakeholder Participation
PubMed: 38619698
DOI: 10.1007/s10597-024-01262-x -
Disability and Health Journal Jan 2022Across and within countries there is a need to understand how the COVID-19 pandemic has impacted populations of individuals with intellectual and developmental...
BACKGROUND
Across and within countries there is a need to understand how the COVID-19 pandemic has impacted populations of individuals with intellectual and developmental disabilities (IDD).
OBJECTIVE
Rates of COVID-19 positivity for adults with IDD, including Down syndrome, relative to adults without IDD in Ontario, Canada were compared. Health profiles and case-based rates of hospitalizations, intensive care unit admissions, and mortality within 30 days of testing positively were compared for those with IDD, including Down syndrome, versus those without IDD.
METHODS
This retrospective cohort study linked health administrative databases using unique encoded identifiers to describe population-level COVID-19 positivity, related hospital use and mortality from January 15, 2020 to January 10, 2021. Incidence rate ratios (RR) and 95% confidence intervals were calculated.
RESULTS
Relative to adults without IDD, COVID-19 positivity rates were 1.28 times higher for adults with IDD and 1.42 times higher for adults with Down syndrome. Compared to adults without IDD, adults with IDD were more than twice as likely to be hospitalized following COVID-19 (RR:2.21 (95%CI: 1.93,2.54)) and to die (RR:2.23 (95%CI: 1.86,2.67). These RRs were greater for adults under 65. For adults with Down syndrome, mortality rates were 6.59 (95%CI: 4.51,9.62) times higher than those without IDD.
DISCUSSION
In Ontario, Canada, hospitalization and mortality rates associated with COVID-19 are higher for adults with IDD than other adults. These findings should inform vaccination strategies that often prioritize older adults in the general population resulting in people with IDD, who are often in younger age groups, being overlooked.
Topics: Aged; COVID-19; Child; Developmental Disabilities; Disabled Persons; Hospitalization; Humans; Ontario; Pandemics; Retrospective Studies; SARS-CoV-2
PubMed: 34340949
DOI: 10.1016/j.dhjo.2021.101174 -
BMC Pediatrics May 2024Sleep has been known to affect childhood development. Sleep disturbance is likely more common in children with developmental delay (DD) than in typical development....
BACKGROUND
Sleep has been known to affect childhood development. Sleep disturbance is likely more common in children with developmental delay (DD) than in typical development. There are few studies on the correlation between sleep disturbance and developmental features in children with DD. Therefore, this study aimed to evaluate the associations between the two in children with DD.
METHODS
A total of 45 children (age range 27.0 ± 11.1) with DD were recruited and evaluated using the Sleep Disturbance Scale for Children (SDSC) and Bayley Scales of Infant and Toddler Development (BSID-III). The outcomes are expressed as means and standard deviations. The correlation between SDSC and BSID-III was assessed using Spearman's rank correlation test. Multiple regression analysis was performed to investigate the relationship between BSID-III domains and SDSC questionnaire subscales. Statistical significance was set at p < 0.05.
RESULTS
Based on the correlation analysis and subsequent hierarchical regression analysis, cognition and socio-emotional domains of BSID-III were significantly associated with the DOES subscale of the SDSC questionnaire. In addition, the expressive language domain of the BSID-III was found to be associated with the DA subscale of the SDSC questionnaire. It seems that excessive daytime sleepiness might negatively affect emotional and behavioral problems and cognitive function. Also, arousal disorders seem to be related to memory consolidation process, which is thought to affect language expression.
CONCLUSION
This study demonstrated that DA and DOES subscales of the SDSC questionnaire were correlated with developmental aspects in preschool-aged children with DD. Sleep problems in children with DD can negatively affect their development, thereby interfering with the effectiveness of rehabilitation. Identifying and properly managing the modifiable factors of sleep problems is also crucial as a part of comprehensive rehabilitation treatment. Therefore, we should pay more attention to sleep problems, even in preschool-aged children with DD.
Topics: Humans; Child, Preschool; Male; Female; Developmental Disabilities; Sleep Wake Disorders; Child Development; Cognition; Infant
PubMed: 38811876
DOI: 10.1186/s12887-024-04857-1 -
Disability and Health Journal Jan 2022Recent evidence suggests that many adults with intellectual and developmental disabilities (IDD) do not adequately manage hypertension (HTN) medication. Known risk... (Randomized Controlled Trial)
Randomized Controlled Trial
Helpers help people with intellectual and developmental disabilities and hypertension to understand their condition and the need to adhere to anti-hypertensive medication.
BACKGROUND
Recent evidence suggests that many adults with intellectual and developmental disabilities (IDD) do not adequately manage hypertension (HTN) medication. Known risk factors for insufficient prescription filling include age, residential placement, and lack of caregiver support. This is a first report of a randomized intervention trial designed to analyze the relationship of a brief educational intervention with increased knowledge about HTN and improvement in prescription filling for anti-hypertensive medication.
OBJECTIVE/HYPOTHESIS
The objective was to test whether an educational flyer and regular messages about HTN and the importance of refilling medication would improve scores on knowledge surveys. Participants were Medicaid members with HTN and IDD (Member) or caregivers (Helpers) who chose to participate on behalf of a Member.
METHODS
Recruitment letters explained that either the Member or their Helper could participate (not both). Participants were randomly assigned to the Case or Comparison group, and both were comprised of Members and Helpers. Only Case participants received a flyer and monthly HTN education messages for one year, but all participants completed knowledge surveys at baseline, six, and 12 months. Linear regression and log-binomial models were used to compare responses between groups.
RESULTS
Case Helpers had statistically significant improvements on HTN knowledge from baseline through the first year, compared to Comparison Members and Comparison Helpers. Regardless of group assignment, Helpers scored better on surveys than did Members.
CONCLUSIONS
This study suggests that it is beneficial to explicitly include Helpers in health care instruction and in management of chronic disease for adults with IDD.
Topics: Adult; Antihypertensive Agents; Caregivers; Child; Developmental Disabilities; Disabled Persons; Humans; Hypertension; Intellectual Disability
PubMed: 34625396
DOI: 10.1016/j.dhjo.2021.101219 -
Developmental Medicine and Child... Jun 2022To report neurological examination findings at 5 to 12 months of age in infants with congenital heart disease (CHD) and to identify predictors of abnormal neurological... (Observational Study)
Observational Study
AIM
To report neurological examination findings at 5 to 12 months of age in infants with congenital heart disease (CHD) and to identify predictors of abnormal neurological examination.
METHOD
This retrospective observational study included infants who required cardiac surgery at less than 3 months of age and underwent a standard neurological examination from a neurologist in the cardiac neurodevelopmental outpatient clinic between age 5 months and 12 months. Predictors for abnormal neurological examination (concerns on structured developmental history, demographic factors, medical history, and newborn neurodevelopmental assessment) were considered for multivariate regression.
RESULTS
The sample included 127 infants (mean age 7mo 2wks), who underwent first cardiac surgery at 7 days (4-49 interquartile range [IQR]) of age and were seen for a neurological examination in the cardiac neurodevelopmental clinic. Neurological abnormalities were common; 88% of infants had an abnormal neurological examination in at least one domain assessed. The most common abnormalities were abnormal axial (48%) and extremity (44%) tone, mostly hypotonia. Abnormal neurological examination was associated with concerns on the concurrent structured developmental history, genetic condition, extracardiac anomaly, longer length of stay, more than one cardiac surgery, ongoing early intervention services, and abnormalities on newborn neurodevelopmental assessment.
INTERPRETATION
Neurological examination abnormalities are common in infants with CHD after infant heart surgery, supporting the need for early and ongoing therapeutic developmental services and adherence to American Heart Association recommendations for developmental follow-up for children with CHD. What this paper adds Neurological examination abnormalities are common in infants who undergo open-heart surgery. Medical complications in infancy increase risk for neurological abnormalities. Family-reported concerns on structured developmental history may predict abnormal neurological examination at 5 to 12 months of age. Abnormal newborn neurodevelopmental assessment may predict abnormal neurological examination at 5 to 12 months of age.
Topics: Cardiac Surgical Procedures; Developmental Disabilities; Heart Defects, Congenital; Humans; Infant; Infant, Newborn; Nervous System Malformations; Neurologic Examination; Retrospective Studies
PubMed: 34921736
DOI: 10.1111/dmcn.15128 -
Pediatric Clinics of North America Jun 2020This article summarizes the literature on prevalence and establishment of severe problem behavior in individuals with intellectual and developmental disabilities,... (Review)
Review
This article summarizes the literature on prevalence and establishment of severe problem behavior in individuals with intellectual and developmental disabilities, empirical support for applied behavior analysis, and evidence-based behavioral assessment and treatment procedures. Early intervention and prevention approaches and the role of the pediatrician with regard to surveillance, early intervention, and coordination of care are discussed.
Topics: Behavior Therapy; Child; Developmental Disabilities; Humans; Intellectual Disability; Problem Behavior; Risk Factors
PubMed: 32443989
DOI: 10.1016/j.pcl.2020.02.005 -
Infant Behavior & Development Aug 2020Few studies investigated whether late preterm infants might have developmental delays in several domains in early life and how stable the lag in developmental status... (Randomized Controlled Trial)
Randomized Controlled Trial
BACKGROUND
Few studies investigated whether late preterm infants might have developmental delays in several domains in early life and how stable the lag in developmental status might be.
AIM
We aimed to examine the stability of potential delays across developmental domains at 24 and 36 months of age in late preterm (34°-36 weeks) and term (≥37 weeks) children and whether the risk of delays remained high at 36 months.
STUDY DESIGN, SUBJECTS, AND OUTCOME MEASURE
We conducted a prospective cohort analysis of the children of pregnant women participating in the Vitamin Antenatal Asthma Reduction Trial (VDAART). 652 children who were prospectively followed up and had parent-completed Ages Stages Questionnaires (ASQ-3) questionnaires at both 24 and 36 months were analyzed to assess their domain-specific developmental status.
RESULTS
6.61 % (42/635) of children had a late preterm birth. Developmental delays were stable between 24 and 36 months on all 5 domains for the children born preterm and on 4/5 domains for those born at term. The developmental domains with the status stability at 24 and 36 months in both late preterm and term children were the gross motor, communication, personal-social skills, and problem-solving. Late preterm children compared with term children remained at higher risk of delays at 36 months for gross motor, communication, and problem-solving skills (aOR = 4.54, 95 %CI: 1.81-10.79; aOR = 8.60, 95 %CI: 3.10-23.28 and aOR = 3.80, 95 %CI: 1.58-8.73, respectively).
CONCLUSION
Late preterm birth is associated with suboptimal development and stability in several domains at both 24 and 36 months and compared with term birth, requiring early monitoring and assessment of the developmental lag to avoid potential long-term implications.
Topics: Adult; Child, Preschool; Cohort Studies; Developmental Disabilities; Double-Blind Method; Female; Humans; Infant, Newborn; Infant, Premature; Male; Pregnancy; Premature Birth; Problem Solving; Prospective Studies; Surveys and Questionnaires; Vitamin D
PubMed: 32599336
DOI: 10.1016/j.infbeh.2020.101462