Intellectual disability (ID) often co-occurs with autism spectrum disorder (ASD). To better understand the needs of persons with ID/ASD, level of emotional development (ED) can be determined with the Scale of Emotional Development-Short (SED-S). This preregistered study examined differences in ED by comparing total, domain, and item scores between people with ID/ASD and people with ID. One hundred seventy-four participants with ID/ASD were matched to 174 participants with ID only. Informants reported on the SED-S, which includes 200 yes-no items grouped into eight domains, with each domain including five stages of ED. The ID/ASD group showed lower total scores (M = 2.19, SD = 0.97) compared with the ID group (M = 2.86, SD = 1.11). They also showed lower scores in all eight domains. When groups were compared based on total scores, people with ID/ASD in SED-S 2 scored lower in the domain Affect, while those in SED-S 3 scored lower in the domains Affect, Communication, and Peers compared with people with ID in the same stage. People with ID/ASD in SED-S 4 scored higher in the domain Peers compared with people with ID in the same stage. There was an uneven distribution of 'yes' responses, significant differences in 'yes' responses to 27 items, and a lower mean frequency of 'yes' responses from people with ID/ASD. Although this study was largely exploratory and warrants replication, results provide an important next step towards a better understanding of the emotional needs and behaviours of people with ID/ASD.

The objective of this retrospective observational study was to examine disparities in health care utilisation for children with Down syndrome (DS). Outpatient Medicaid claims from 2016 to 2018 were used to examine the utilisation of therapy services and annual Medicaid payments for children with DS based on sex, race and age. Multilevel logistic regression was used to analyse the relationship of therapy utilisation with sex, race and age. Gamma-distributed log link model was used to analyse the relationship between annual Medicaid payments and race. The cohort consisted of 17 813 children with DS aged 21 and under. There was no significant difference in utilisation of therapy services between sexes. The likelihood of receiving therapy services decreased for Black or other race individuals compared to White. White individuals had higher annual Medicaid payments than Black or other race individuals. The likelihood of receiving therapy services increased for children 3-17 years old when compared to children aged 0-2 years old. There are significant disparities in therapy utilisation for children with DS related to race and age. Increased annual Medicaid payments for White individuals may indicate that they are receiving more outpatient services than the Black/other populations. Decreased therapy utilisation for ages 18-21 years corresponds with the transition to adulthood. The decreased likelihood of receiving therapy services for ages 0-2 is concerning due to the importance of early intervention. Further research is needed to evaluate factors contributing to disparities in outpatient utilisation for children with DS.

This study compared anxiety and depressive problems in adolescents with a mild to borderline intellectual disability in a residential treatment facility (MBID-RT) to those in the general community (MBID-GC). Participants (N = 923, aged 11.9-19.3 years, M = 14.6 years, SD = 1.51, 42% girls) completed measures on anxiety and depressive problems. Part of this group (n = 155) participated twice, roughly 1 year apart. Adolescents in the MBID-RT subgroup reported statistically more anxiety and depressive problems (higher average scores, higher percentages above cut-off scores and higher percentage of comorbid anxiety and depressive symptoms). Over a 1-year period, anxiety and depressive symptoms decreased in the MBID-GC subgroup but not in the MBID-RT subgroup. Findings call attention to the high prevalence of anxiety and depressive symptoms in adolescents with MBID in general, and those in residential treatment in particular, especially when externalising problems may be on the foreground.

People with intellectual disability suffer complex challenges due to adaptive functioning limitations, high rates of chronic diseases and shortened lifespans compared with the general population. Telomere shortening is a hallmark of ageing, and short telomeres are linked to neurological disorders. The main objective of this systematic review and meta-analysis was to identify any differences in telomere length and the rate of telomere attrition in leukocytes and fibroblasts from people with intellectual disability and controls. PubMed, Scopus and ScienceDirect were searched. Articles that compared telomere length in individuals with intellectual disability to apparently healthy age-matched controls were included. Risk of bias was assessed using the AXIS tool and data were analysed using CMA. Fifteen studies comprised of 17 comparisons provided data and were included in meta-analyses. Compared with healthy controls (N = 481), people with intellectual disability (N = 366) from a known genetic syndrome (Cri du chat, Down, Hoyeraal-Hreidarsson, Williams or Nicolaides-Baraitser) possessed shorter leukocyte telomeres (SMD: -0.853 [95% CI: -1.622 to -0.084], p = 0.03). Similarly, relative to controls (N = 16), people with syndromic intellectual disability (N = 21) possessed shorter fibroblast telomeres (-1.389 [-2.179 to -0.599], p = 0.001). Furthermore, people with syndromic forms of intellectual disability also demonstrated a faster rate (2.09-fold) of telomere shortening. Consistent with epidemiological findings on mortality and morbidity risk, people with syndromic intellectual disability appear to undergo a faster rate of biological ageing compared to the general population. These findings emphasise the need for healthy ageing lifestyle (i.e., exercise and stress management) and therapeutic interventions for people with syndromic intellectual disability.

To help redress the global bias of intellectual disability research drawing on high-income countries, previous studies have used data from UNICEF's Early Child Development Index (ECDI) to create an indicator of Significant Cognitive Delay (SCD) in young children. Recently, UNICEF have replaced the ECDI with an updated 20-item version; the ECDI2030. Our aim was to investigate the utility of using ECDI2030 data to provide a more robust measure of SCD. We conducted secondary analysis of ECDI2030 data on 92 506 2-4-year-old children from 23 nationally representative surveys undertaken primarily in the world's poorer countries. The 11 learning items of the ECDI2030 showed good internal consistency overall and in each of the participating countries. Using age-specific cut-points for SCD generated from 20 013 children in nine countries with high Human Development Index (HDI) scores produced country-level estimates of the prevalence of SCD that ranged from 1.1% to 34.1%. These prevalence estimates showed a strong relationship with both country HDI score and national wealth. Increased within country risk of SCD was independently associated with male gender, lower relative household wealth, lower level of maternal education and non-enrolment in early childhood educational programmes. Comparison with SCD based on the older ECDI indicated that the two versions correlated very highly, although the newer version produced slightly higher prevalence estimates than the previous version. The ECDI2030 is being used in Round 7 of UNICEF's Multiple Indicator Cluster Surveys which are currently underway in 46 countries and in a growing number of USAID funded Demographic Health Surveys. Individual-level data from surveys are freely available to researchers. As data from these surveys begin to be released, they will provide a highly cost-efficient way to redress the current bias in intellectual and developmental disabilities research toward high-income countries and to understand the of children at risk of intellectual disability or global developmental delay in the world's poorer countries.

People with intellectual disability (ID) are more susceptible to experiencing minor health issues. This research describes the common ailments and nonprescription medications found in people with ID who have had a medication review performed by a credentialed pharmacist in Australia. The aims of this research were to (i) describe the common ailments found within people with ID and (ii) identify and quantify the nonprescription medications documented in medication reviews for people with ID. This research conducted a retrospective analysis of medication review reports and referrals from credentialed pharmacists who have performed a medication review for a person with ID between January 2020 and January 2024. A total of 80 responses and reports were obtained. The average age of the person with ID was 52 years. On average, each medication review listed 6.6 common ailments and 8.0 nonprescription medications. The highest number of nonprescription medications listed for a single individual was 26. This research is the first to exclusively examine common ailments and nonprescription medications found in people with ID through medication reviews. Further research is needed to confirm study findings revealing a potentially high occurrence of common ailments and nonprescription medication use in this population compared to other similar populations and notable polypharmacy for nonprescription medications.

Children and young people with intellectual and developmental disabilities (IDDs) face challenges across various aspects of their lives and require significant support, particularly in the field of education. In the United Kingdom, Education, Health and Care Plans (EHCPs) support those with special educational needs (SEN) in schools. Disparities exist throughout our national educational system with respect to how long pupils with IDDs must wait for an EHCP, but the socio-demographic influences on those disparities are currently unknown. Delays in providing EHCP support result in negative educational, wellbeing and developmental outcomes. Using data from the National Pupil Database (NPD), we examined variabilities in waiting times for EHCP provision, and correlations with potentially influential variables such as SEN classification, family socio-economic status, region of domicile and ethnicity. This national study recruited 2131 participants [6-28 years old, mean (SD) = 14.1 (4.4) years] with IDDs associated with a genetic condition. Families gave consent for their child's educational records to be reviewed by the research team. All participants had received an EHCP at some point during their full-time education in England. We accessed the NPD (provided by the UK Department for Education), for details of participants' primary SEN type, free school meal eligibility, ethnicity and the academic year in which they received an EHCP. Based on their home address postcode, we assigned to each family an index of multiple deprivation (IMD) score. From the NPD, we calculated the waiting time between a child's recommendation for an EHCP and the time they received it. We compared these data with IMD scores, primary SEN type, free school meal eligibility, English region of domicile, ethnicity, and sex. We used linear regression models to examine the associations between the predictors (the above demographic independent variables) and the duration of time it took for children to receive an EHCP. Participants with IDDs of genetic aetiology who lived in the most socially deprived regions of England waited longer for EHCP support than those in the least deprived regions, irrespective of the NPD classification of the child's SEN type. Neither the child's ethnicity nor their sex had any added impact. Whatever their IMD status, participants living in London obtained an EHCP more quickly than those living elsewhere in England. There are nationwide inconsistencies in the time taken to provide EHCPs to children and young people whose intellectual impairments are of known genetic aetiology. Regional inequalities in the funds available to local education authorities could be a major contributory factor.

Adults with Down syndrome (DS) have an elevated risk and early age of onset for Alzheimer's disease (AD). To support upcoming clinical AD trials, there is a critical need to establish cognitive outcome measures that can be used to capture intervention effects. One measure that has successfully been used to detect AD-related cognitive decline in the DS population is a measure of episodic memory, the modified Cued Recall Test (mCRT). Demonstrated utility of the mCRT warrants further investigation into comparisons between the A and B versions, free versus cued recall and changes in performance over time to better understand sensitivity for tracking memory decline over time based on age and AD clinical status. Participants were 272 adults with DS aged 25-81 (mean age = 43.12 years, SD = 9.79). Study procedures were completed at three cycles of data collection: baseline, 16-month follow-up and 32-month follow-up. Participants were enrolled in the Alzheimer Biomarker Consortium-Down Syndrome longitudinal study and completed the mCRT as part of a multiday evaluation. Comparisons were made between the A and B versions of the mCRT in recall and intrusion scores. Participants' ratio of free relative to cued recall was also examined at baseline and longitudinally. Participant performance was compared by age group, clinical AD status (cognitively stable [CS], mild cognitive impairment [MCI] or AD dementia) and premorbid level of intellectual disability (ID). Version differences were identified, with the most salient differences in the moderate and severe/profound ID groups. The mCRT free recall declined with age in CS participants. Free and cued recall scores were lower in those with MCI and AD dementia, with the exception of the mild ID MCI group, whose cued recall scores were not significantly different from the CS group. Decline across 32 months (mCRT total score decline of 1.29 points/year) was observed for CS participants beginning at ≥ 50 years old, with more pronounced declines in adults with DS with an MCI or AD dementia diagnosis (3.36 and 4.20 points/year, respectively). Characterising test version differences and participant free versus cued recall performance on the mCRT is important for understanding performance under testing conditions and to maximise the sensitivity of clinical interventions to capture meaningful effects. Our findings suggest that clinical AD trials for DS should be cautious about using both versions of the mCRT. Examining the profile of free relative to cued recall may enhance sensitivity for detecting treatment benefits for adults with DS across the range of premorbid ID levels.

Behavioural concerns, such as aggression and self-injury, are common among youth with intellectual and developmental disabilities. Additional research is needed to further explore the specific ways in which these types of behaviour impact individuals and their families. Caregivers seeking treatment for their child's behavioural concerns completed an interview regarding the negative impact of their child's behaviour related to (a) physical harm to self or others, (b) property damage, (c) structural modifications, (d) situational avoidance and (e) reactive measures. We reviewed outcomes of these interviews to report on the prevalence of various negative impacts in this clinical sample. Most caregivers reported at least some physical harm (72.99%), property damage (63.99%) and preventative measures such as avoiding removing preferred items or activities (72.35%). Some caregivers endorsed severe negative impacts, such as the need for emergency services (10.61%) or residential placements (5.14%). Caregivers in this clinical sample consistently endorsed negative impacts resulting from behavioural concerns. This information is crucial in advocating for additional services for this high-need population, and the interview used to gather this information may be a helpful tool to guide future research and clinical work.

Down syndrome (DS) stands as the most frequent chromosomal abnormality leading to intellectual disability. A prevalence rate of 6.1-13.1 per 10 000 births has been estimated. Although life expectancy has been increasing from 25 years in 1983 to 60 years in 2020 in this population, their quality may be impaired by the development of diseases. However, it has also opened the possibility of carrying out a significant number of cardiovascular risk studies in DS. This includes comparisons of biochemical cardiometabolic risk factors, including total cholesterol (TC), triglycerides (TG), high-density lipoprotein cholesterol (HDL-C) and low-density lipoprotein cholesterol (LDL-C), between normal-weight children with DS and age- and gender-matched children without DS. In this cross-sectional study, with parental consent, 25 children with DS and 30 age-matched controls (8-12 years old) participated. Body mass index (BMI) was calculated from anthropometric assessments, while glucose and lipid profiles were measured from the obtained blood samples. According to the World Health Organization BMI criteria, all individuals from both groups had normal weight. The DS group exhibited higher TC (179.4 ± 50.4 mg/dL vs. 120.7 ± 31.6 mg/dL, p < 0.000), TG (125.2 ± 42.5 mg/dL vs. 86.5 ± 54.1 mg/dL, p < 0.005) and LDL-C (108.1 ± 40.8 mg/dL vs. 120.8 ± 53.5 mg/dL, p = 0.373), while HDL-C was lower (46.3 ± 12.3 mg/dL vs. 54.7 ± 11.8 mg/dL, p = 0.008) compared with the control group. The present study suggests that children with DS have a higher prevalence of cardiometabolic risk factors compared with the general population, regardless of weight, highlighting the importance of studying dyslipidaemias in the DS population independently of body weight.