Prevalence Of Intellectual Disability Research Articles

Prevalence of intellectual disability among adults born in the 1980s and 1990s in the United States.

Prevalence of intellectual disability (ID) is currently estimated through parent report on surveys of children. It is difficult to estimate the number of adults living with ID in the United States because no comprehensive survey or surveillance allows for identification. The purpose of this study was to estimate the prevalence and number of adults with ID born between 1980 and 1999 using multiple years of the National Health Interview Survey (NHIS) and Census data. We concatenated the NHIS from 1997-2016 that evaluated parental response about whether a child aged 3-17years had an ID. Using weighted survey analyses, we estimated the prevalence of ID among individuals across four birth cohorts-(1) 1980-1984, (2) 1985-1989, (3) 1990-1994, and (4) 1995-1999. The number of adults with ID was then extrapolated by applying these prevalence rates to Census population estimates (as of 1 July 2021) of respective birth cohorts. Weighted prevalence of ID varied by birth cohort, sex, race and ethnicity, and US Census Bureau regions. The overall prevalence rate was 1.066 [95% confidence interval (CI): 0.831-1.302] for adults born between 1980 and 1984, 0.772 (CI: 0.654-0.891) for adults born between 1985 and 1989, 0.774 (0.675-0.874) for adults born between 1990 and 1994, and 1.069 (CI: 0.898-1.240) for adults born between 1995 and 1999. Overall, we estimate that 818564 adults with ID who were approximately 21-41years were living in the United States as of 2021. This study provides researchers examining adult health outcomes with an estimated denominator of young and middle-aged adults living with ID in the United States. Policymakers can use this information to support justification for resource and service needs, and clinicians may benefit from understanding that ID is a lifelong developmental condition often with additional physical, emotional and developmental needs requiring tailored care.

Prevalence and Medical Costs of Intellectual Disabilities and Pervasive Developmental Disorder in Korea: Based on National Health Insurance Service Claims Data from 2007 to 2019.

We aimed to investigate the annual prevalence of intellectual disabilities (ID) and autism spectrum disorder employing claims data registered in Korean National Health Insurance Service. We also estimated the annual average of medical costs incurred from these disorders using same datasets. In order to obtain the prevalence, we selected patients diagnosed with ID and pervasive and specific developmental disorders (PDD) from 2007 to 2019. The ensuing annual average of medical costs was also estimated from these patients. The annual prevalence of ID and PDD (per 100,000) between 2007 and 2019 ranged from 56.7 to 78.6 and from 22.0 to 44.6 respectively. Regarding the annual average of total medical expenditure per a patient, the expenditure of the ID group was higher than that of PDD throughout the years, as shown that the ID expenditure ranged from 769.7 to 1,501.2 US dollars as opposed to the PDD expenditure in the range of 312.5 to 570.7 US dollars. The further comparison in relation to income levels elaborated that the medical aid beneficiary group constitutes the highest one and the difference of the expenditure across the remaining income groups was not prominent although the very low group generally ranked the highest over the years. The prevalence of ID and PDD constantly increased and the same trend was displayed in ensuing health expenditures throughout the period. This implies that increasing needs exist across these patients with regards to therapeutic interventions, thereby contributing to prioritizing medical policies on national perspectives.

The association between maternal infection and intellectual disability in children: A systematic review and meta-analysis.

There is arguing evidence regarding the association between maternal infections during pregnancy and the risk of intellectual disability (ID) in children. This systematic review and meta-analysis are essential to determine and address inconsistent findings between maternal infections during pregnancy and the risk of ID in children. The MOOSE and PRISMA guidelines were followed to perform and report on this study. The Medline/PubMed, Web of Science, Embase, and Scopus databases were searched from inception up to March 15, 2023, to identify potentially eligible studies. Inclusion and exclusion criteria were applied, as well as the Newcastle-Ottawa Scale was used to assess the methodological quality of studies included. The included studies were divided into two types based on the participants: (1) ID-based studies, which involved children with ID as cases and healthy children as controls and evaluated maternal infection in these participants; (2) infection-based studies, which assessed the prevalence or incidence of ID in the follow-up of children with or without exposure to maternal infection. We used Random-effects models (REM) to estimate the overall pooled odds ratio (OR) and 95% confidence intervals (CIs). The between-studies heterogeneity was assessed with the χ2-based Q-test and I2 statistic. Subgroup and sensitivity analyses were applied to explore the source of heterogeneity and results consistency. A total of eight studies including 1,375,662 participants (60,479 cases and 1,315,183 controls) met the eligibility criteria. The REM found that maternal infection significantly increased the risk of ID in children (OR, 1.33; 95% CI, 1.21-1.46; I2 = 64.6). Subgroup analysis showed a significant association for both infection-based (OR, 1.27; 95%CI, 1.15-1.40; I2 = 51.2) and ID-based (OR, 1.44; 95%CI, 1.19-1.74; I2 = 77.1) studies. Furthermore, subgroup analysis based on diagnostic criteria revealed a significant association when maternal infection or ID were diagnosed using ICD codes (OR, 1.33; 95% CI, 1.20-1.48; I2 = 75.8). Our study suggests that maternal infection during pregnancy could be associated with an increased risk of ID in children. This finding is consistent across different types of studies and diagnostic criteria. However, due to the heterogeneity and limitations of the included studies, we recommend further longitudinal studies to confirm the causal relationship and the underlying mechanisms.

Valproic Acid-Associated Acute Pancreatitis: Systematic Literature Review.

Long-term medication with valproic acid has been associated with acute pancreatitis. The purpose of this report is to gain insight into the features of this pancreatitis. A preregistered literature search (CRD42023438294) was performed on the National Library of Medicine, Excerpta Medica, Web of Science, and Google Scholar. Patients with alcohol abuse disorder, gallstone disease, hypertriglyceridemia or hypercalcemia, patients with acute valproic acid intoxication, and patients with a pre-existing pancreatitis were excluded. For the final analysis, we retained 73 reports published between 1979 and 2023, which described 125 subjects (83 children and 42 adults predominantly affected by an epilepsy) with an acute pancreatitis related to valproic acid. The diagnosis was made 11 (3.0-24) months (median and interquartile range) after starting valproic acid. One hundred and five cases (84%) recovered and twenty (16%) died. Sex, age, dosage or circulating level of valproic acid, latency time, prevalence of intellectual disability, and antiepileptic co-medication were similar in cases with and without a lethal outcome. Nineteen subjects were rechallenged with valproic acid after recovery: sixteen (84%) cases developed a further episode of pancreatitis. In conclusion, pancreatitis associated with valproic acid presents at any time during treatment and has a high fatality rate.

Bridging the gap in healthcare: creating an online health information prototype for individuals with intellectual disabilities to promote equity and knowledge transfer.

The prevalence of intellectual disabilities (ID) in Austria is estimated to be approximately 1% of the population. Growing awareness of the major challenges faced by individuals with ID, including difficulties in comprehending written health information, communication barriers with healthcare professionals, and limited inclusion in health education research, necessitates concerted efforts to address these issues. The utilization of guidelines promoting easy-to-read language, web accessibility, and usability can significantly enhance access to health information and improve health literacy among people with ID. The "LUCHS-Gesundheitsinformationen (Health Information)" project aimed to improve knowledge transfer of health information for people ID by creating a website prototype. Unstructured interviews were conducted with two focus groups (n = 20) people with ID and their caretakers to elicit relevant topics and ensure the quality, comprehensibility, and usability of a website prototype. A convenience sample of 20 adults employed in sheltered workshops of the Caritas Lower Austria West facility who met the inclusion criteria participated. The prototype addressed four main topics, namely nutrition, medical specialization, first aid, and patient information, offering comprehensive information using easy-to-read language and pictorial content. The website prototype followed web accessibility suggestions and incorporated external resources, such as brochures and emergency contact details, to enhance usability and provide a reliable source of health information for individuals with ID. The findings suggest that a website format is a feasible means of providing accessible online health information for people with ID. However, further research is warranted to explore the potential of digital health applications for individuals with ID, as inclusion in the Austrian register for digital health applications necessitates meeting multiple quality standards, thereby instilling trust among the target group.

A community developed conceptual model for reducing long-term health problems in children with intellectual disability in India.

Children with intellectual disability (ID) have a higher risk of long-term health problems in adulthood. India has the highest prevalence of ID of any country with 1.6 million under-five children living with the condition. Despite this, compared with other children, this neglected population is excluded from mainstream disease prevention and health promotion programmes. Our objective was to develop an evidence-based conceptual framework for a needs-based inclusive intervention to reduce the risk of communicable and non-communicable diseases among children with ID in India. From April through to July 2020 we undertook community engagement and involvement activities in ten States in India using a community-based participatory approach, guided by the bio-psycho-social model. We adapted the five steps recommended for the design and evaluation of a public participation process for the health sector. Seventy stakeholders from ten States contributed to the project: 44 parents and 26 professionals who work with people with ID. We mapped the outputs from two rounds of stakeholder consultations with evidence from systematic reviews to develop a conceptual framework that underpins an approach to develop a cross-sectoral family-centred needs-based inclusive intervention to improve health outcomes for children with ID. A working Theory of Change model delineates a pathway that reflected the priorities of the target population. We discussed the models during a third round of consultations to identify limitations, relevance of the concepts, structural and social barriers that could influence acceptability and adherence, success criteria, and integration with existing health system and service delivery. There are currently no health promotion programmes focusing on children with ID in India despite the population being at a higher risk of developing comorbid health problems. Therefore, an urgent next step is to test the conceptual model to determine acceptance and effectiveness within the context of socio-economic challenges faced by the children and their families in the country.

Sexually Dimorphic Alterations in the Transcriptome and Behavior with Loss of Histone Demethylase KDM5C.

Chromatin dysregulation has emerged as a major hallmark of neurodevelopmental disorders such as intellectual disability (ID) and autism spectrum disorders (ASD). The prevalence of ID and ASD is higher in males compared to females, with unknown mechanisms. Intellectual developmental disorder, X-linked syndromic, Claes-Jensen type (MRXSCJ), is caused by loss-of-function mutations of lysine demethylase 5C (KDM5C), a histone H3K4 demethylase gene. KDM5C escapes X-inactivation, thereby presenting at a higher level in females. Initially, MRXSCJ was exclusively reported in males, while it is increasingly evident that females with heterozygous KDM5C mutations can show cognitive deficits. The mouse model of MRXSCJ, male Kdm5c-hemizygous knockout animals, recapitulates key features of human male patients. However, the behavioral and molecular traits of Kdm5c-heterozygous female mice remain incompletely characterized. Here, we report that gene expression and behavioral abnormalities are readily detectable in Kdm5c-heterozygous female mice, demonstrating the requirement for a higher KDM5C dose in females. Furthermore, we found both shared and sex-specific consequences of a reduced KDM5C dose in social behavior, gene expression, and genetic interaction with the counteracting enzyme KMT2A. These observations provide an essential insight into the sex-biased manifestation of neurodevelopmental disorders and sex chromosome evolution.

The risk of autism spectrum disorder and intellectual disability but not attention deficit/hyperactivity disorder is increased in individuals with esophageal atresia.

Knowledge of neurodevelopmental disorders such as attention deficit/hyperactivity disorder (ADHD), autism spectrum disorders (ASD) and intellectual disability (ID) in patients with esophageal atresia (EA) is scarce. The aims of this study were to investigate the prevalence and risk of ADHD, ASD and ID in individuals with EA. Data were obtained from four longitudinal population-based registries in Sweden and analyzed using Cox proportional hazards regression. Patients with EA born in Sweden in 1973-2018 were included together with five controls for each individual with the exposure matched on sex, gestational age at birth, birth year and birth county. Individuals with chromosomal aberrations and syndromes were excluded. In total, 735 individuals with EA and 3675 controls were included. Median age at time of the study was 20years (3-48). ASD was found in 24 (3.9%), ADHD in 34 (5.5%) and ID in 28 (4.6%) individuals with EA. Patients with EA had a 1.66 times higher risk of ASD (95% confidence interval [CI], 1.05-2.64) and a 3.62 times higher risk of ID (95% CI, 2.23-5.89) compared with controls. The risk of ADHD was not significantly increased. ADHD medication had been prescribed to 88.2% of patients with EA and ADHD and to 84.5% of controls with ADHD. Individuals with EA have a higher risk of ASD and ID than individuals without the exposure. These results are important when establishing follow-up programs for children with EA to allow timely detection and consequentially an earlier treatment and support especially before school start.

Intellectual functioning and adaptive behaviour in children with Dravet syndrome: A population-based study.

To identify, on a population basis, the prevalence of intellectual disability in children with Dravet syndrome, profiles on a measure of adaptive behaviour, and factors associated with intellectual functioning and adaptive behaviour. Forty-two out of 48 children with Dravet syndrome living in Sweden, born between 1st January 2000 and 31st December 2018, underwent assessment of intellectual functioning and adaptive behaviour. Factors associated with level of intellectual functioning and adaptive behaviour were analysed. Eight-six per cent (n= 36) of the children fulfilled DSM-5 criteria for intellectual disability (29% [n= 12] mild intellectual disability, 24% [n= 10] moderate intellectual disability, 33% [n= 14] severe intellectual disability, 0% profound intellectual disability) and 93% (n= 39) had an adaptive behaviour composite more than two standard deviations below the mean. Communication was a significant weakness compared with daily living skills (p< 0.001; mean difference 95% confidence interval [CI] -8.193 to -4.092) and socialization (p= 0.001; mean difference 95% CI 6.511 to -1.775) on the Vineland Adaptive Behavior Scales, Second Edition. The only factors significantly associated with both decreased adaptive behaviour and presence of severe intellectual disability was the presence of increased autistic symptoms and younger age. Children with Dravet syndrome have a very high level of intellectual disability and almost all have significant deficits in adaptive behaviour. Greater deficits in adaptive behaviour and greater severity of intellectual disability are associated with the presence of increased autistic symptoms, highlighting the need for comprehensive neurodevelopmental assessment for all affected children. Eighty-six per cent (n=36) of children with Dravet syndrome fulfilled criteria for intellectual disability. Ninety-three per cent (n=39) of children with Dravet syndrome had significant deficits in adaptive behaviour. Communication was a significant weakness on a measure of adaptive behaviour. Increased autistic symptoms were associated with greater deficits in cognition/adaptive behaviour. Older age and earlier status epilepticus were associated with decreased adaptive behaviour.

Trends in the prevalence of intellectual disability among children in Taiwan.

Intellectual disability (ID) is a major developmental disability. However, data on changes in the prevalence over time at the national level are limited. Using data from the national disability registry, we conducted an ecological study to evaluate the time trends of ID among children in Taiwan. We calculated the prevalence of ID by age, sex and severity, from 2000 to 2011, and assessed the time trends. During the study period, the overall prevalence of ID in children aged 3-17years increased from 3.60 to 5.91 per 1000 (β=0.22, P<0.001, r2 =0.97). The prevalence of mild ID (MID, intelligence quotient: 50-69) increased from 1.30 to 3.60 per 1000 (β=0.21, P<0.001, r2 =0.98). However, the prevalence of severe ID (SID, intelligence quotient: <50) was relatively constant, between 2.22 and 2.38 per 1000 (β=0.01, P=0.076, r2 =0.96). Boys had a higher prevalence than girls, and the average boy-to-girl prevalence ratio was 1.42 for MID and 1.31 for SID. The boy-to-girl prevalence ratios of MID and SID decreased over time (β=-0.01, P<0.001, r2 =0.99 for MID; β=-0.01, P<0.001, r2 =1.00 for SID). The prevalence of ID in Taiwanese children increased from 2000 to 2011 and was largely attributable to increases in MID. Boys had a higher prevalence of ID and were more likely to have MID.

72 Prevalence of Neurodevelopmental Disorder among Indigenous Children: A Systematic Review

Abstract Background Neurodevelopment involves sensory-motor, cognitive, and social-emotional domains, which can be influenced by biological and psychosocial factors. Poor neurodevelopment can result in missing developmental milestones and neurodevelopmental disorders (NDs) that translate into negative consequences for long-term health and well-being. Indigenous children in countries with similar colonial histories face a disproportionate burden of infant mortality, chronic diseases, injuries, and disability compared to non-Indigenous children. However, there is no consensus on the prevalence of NDs among Indigenous children around the world. Objectives This systematic review (PROSPERO 2021 CRD42021238669) synthesized current evidence on the prevalence of NDs among Indigenous children in Australia, Canada, New Zealand, and the USA. Design/Methods Comprehensive searches of five databases from 2005 to Feb 15, 2021 were conducted to identify cohort and cross-sectional studies that assessed the objective. Two independent reviewers conducted study selection, data extraction/analysis, and risk of bias assessment. Risk of bias was assessed using the Newcastle-Ottawa scale for cohort and ecological studies (adapted), and the Quality Assessment Tool for Prevalence Studies by Hoy et al. for cross-sectional studies. Prevalence odds ratios (pOR) with 95% confidence intervals (CI) were calculated in random-effects meta-analyses for each ND outcome if there were two or more studies of the same study design. Results Of the 864 studies identified, 25 studies met the inclusion criteria. Twelve studies were conducted in Australia, one in Canada, four in New Zealand, and eight in the USA. Four studies evaluated attention-deficit/hyperactivity disorder (ADHD) prevalence, 13 for autism spectrum disorder (ASD), 10 for intellectual disability (ID), and five for motor disorders (MD). Most cohort studies (10/17) had high risk of bias. All cross-sectional studies (n=8) had low risk of bias. The prevalence of ADHD, ASD, ID, and MD for Indigenous children ranged from 2.7-3.9%, 0.07-3.0%, 1.1-3.9%, and 0.18-0.47%, respectively. Prevalence in non-Indigenous children ranged from 1.6-5.6%, 0.31-3.3%, 0.87-2.3%, and 0.22-0.37%. In cross-sectional studies, Indigenous children had decreased odds of ASD (three studies; pOR=0.80; 95% CI: 0.71-0.89) compared to non-Indigenous children. In cohort studies, higher odds of MD (two studies; pOR=1.57; 95%CI: 1.35-1.84) and lower odds of ASD (four studies; pOR=0.46; 95% CI: 0.28-0.76) were found in Indigenous children compared to non-Indigenous children. Conclusion Prevalence rates are greater in Indigenous children for MD and lower for ASD compared to their non-Indigenous counterparts. Differences in NDs prevalence between Indigenous and non-Indigenous children may be due to differences in access to health care services/assessment.

Trends of the disease burden of intellectual disability among children and adolescents from 1990 to 2019 in China

Objective: This study aims to analyze the disease burden of intellectual disability among Chinese children and adolescents aged 0-19 years in 2019 and its trends from 1990 to 2019. Methods: Data were gathered from the Global Burden of Disease study. The prevalence and years lived with disability (YLDs) of intellectual disability among Chinese children and adolescents were compared with the global average by gender, age group, and severity of disability in 2019. Joinpoint regression model was used to analyze the trends in the prevalence and YLDs of intellectual disability among Chinese children and adolescents from 1990 to 2019. Results: The prevalence and YLDs of intellectual disability among Chinese children and adolescents in 2019 were 1 522.65 per 100 000 (95%UI: 1 228.62 per 100 000-1 817.55 per 100 000) and 109.81 per 100 000 (95%UI: 72.15 per 100 000-158.09 per 100 000), respectively, which were lower than the global average. The prevalence and YLDs of severe intellectual disability in China were slightly higher than the global average. The average annual percent changes in the prevalence and YLDs of intellectual disability among Chinese children and adolescents were -0.23% (95%CI: -0.26%--0.21%, P<0.001) and 0.74% (95%CI: 0.66%-0.81%, P<0.001) from 1990 to 2019, respectively. The prevalence and YLDs of severe intellectual disability showed continuously increasing trends over the past 30 years. Conclusions: The disease burden of intellectual disability among Chinese children and adolescents was lower than the global average in 2019, but severe intellectual disability was higher than the global average. The prevalence of intellectual disability among Chinese children and adolescents showed an overall decrease, while YLDs showed an increasing trend from 1990 to 2019.

Associations between estimates of perinatal industrial pollution exposures and intellectual disability in Utah children.

While heavy metals exposure is associated with intellectual disability (ID), little is known about associations between industrial pollution and ID. The objective of this analysis is to assess associations between estimated perinatal industrial pollution exposures from the US Environmental Protection Agency's Risk Screening Environmental Indicators Microdata and children's ID risk. We conducted a case-control study of children born in Utah from 2000 to 2008 (n = 1679). Cases were identified through the Center for Disease Control's Autism and Developmental Disabilities Monitoring Network's Utah site and matched with controls based on birth year, sex, and birth county. We used multivariable generalized estimating equations to examine associations between estimated perinatal industrial pollution exposures and ID risk. The fourth quartile of industrial pollution exposure was associated with increased odds of ID relative to the first (Odds Ratio [OR]: 1.73, 95% Confidence Interval [CI]: 1.23-2.44) and second (OR: 1.67, CI: 1.19-2.35) quartiles. Similarly, the third quartile was associated with increased odds of ID relative to the first (OR: 1.47, CI: 1.06-2.03) and second (OR: 1.41, CI: 1.02-1.96) quartiles. Findings were robust to varied model specifications. Maternal residential exposures to industrial pollution were associated with increased ID prevalence in Utah. Since environmental correlates of ID are understudied, additional research is needed.

Mental, Neurological, and Somatic Comorbidities and Their Treatment in Persons With Intellectual Disability.

Persons with intellectual disability (ID) often suffer from significant comorbidities. As data have been lacking until now, the present report is the first one containing outpatient data on the prevalence of ID in Germany, its comorbidities, and outpatient (drug) treatment. This study is based on the nationwide outpatient billing data and drug prescription data of all SHI-insured adults (SHI, statutory health insurance) (age 18-109) who were seen at least once in an outpatient medical practice in 2018. Patients with at least two F70-F79 diagnoses in two quarters were included in the study group (SG) (n = 324 428). A random sample of patients without ID served as the control/comparison group (CG) (n = 648 856). The odds ratios (SG vs. CG) for comorbidities, prescriptions of selected classes of drugs, and involvement of medical specialties were each analyzed by multivariate logistic regression. The prevalence of ID was 0.55%. ID was found to be associated with a variety of comorbidities. The highest odds ratios [OR] were for infantile cerebral palsy (OR: 121.71; 95% confidence interval: [111.67; 132.67]), autism spectrum disorders (OR: 83.85 [75.54; 93.08]), and developmental disabilities (OR: 61.34 [58.86; 63.94]). The most frequently prescribed drug categories (as classified by the anatomic-therapeutic-chemical (ATC) convention) were psychoactive drugs (antipsychotic, anxiolytic, and hypnotic drugs and sedatives) and antiepileptic drugs (OR: 10.40 [10.27; 10.53] and 9.90 [9.75; 10.05], respectively). Both general practitioners (OR: 2.64 [2.59; 2.69]) and medical specialists were consulted by the SG more frequently than by the CG; the type of specialist most commonly consulted was in the neuropsychiatric field, i.e., a neurologist or psychiatrist (OR: 6.85 [6.77; 6.92]). A diagnosis of ID frequently appears in outpatient billing data. Future analyses should be devoted to the specific care of people with intellectual disability, who constitute an especially multimorbid and vulnerable patient group.

P511. Prevalence of Intellectual Disability and the Relation With Psychopathology in Adults With 22q11.2 Deletion Syndrome

22q11.2 deletion syndrome is associated with an increased risk for developing psychiatric disorders including psychoses. A substantial number of patients function on a borderline intellectual level and 45% meets criteria for a mild or moderate intellectual disability (ID). In a subgroup of patients, cognitive decline has been found which has been linked with schizophrenia. However, most of these studies have been conducted in children and adolescents. Therefore, little is known about the prevalence of ID and the relationship with psychopathology in adulthood.

MEdication Management in older people with Intellectual Disabilities (MEMID): a scoping review

Abstract Introduction Globally, around 1 in 100 adults have intellectual disabilities (ID) (synonymous with learning disability in the UK) (1) yet their needs in terms of healthcare in general and medication management in particular, are under-researched. People with ID have more comorbidities compared with those without ID and around one third of older people (≥ 50 years) with ID (OPwID) have two or more chronic conditions, putting them at risk of polypharmacy (use of multiple medicines) (2). Aim To undertake a scoping review to gather evidence on the barriers and facilitators in the medication management of OPwID from a multi-stakeholder (patient, carer and healthcare professional) perspective. Methods Standard scoping review methods were used. Electronic databases (Medline, PsycINFO) were searched from 2011-2021 using a range of search terms. Studies were included if they involved: OPwID without dementia (all types); healthcare professionals or caregivers caring for individuals with ID; problems related to medication use. The review was restricted to studies in the English language. The PRISMA-ScR checklist and reporting standards was used to conduct and report the review. Independent duplicate screening and data extraction was undertaken. The quality of studies was not formally assessed. A narrative synthesis was conducted to summarise the results and included barriers and facilitators associated with medicines management from patients’/carers’ and professionals’ perspectives. Results Eight studies were included, of which seven used qualitative methods. The majority of studies were undertaken in Europe ((the Netherlands (2), Norway (1), Belgium (1), UK (3)) and one was conducted in the US. Patients/carers reported several barriers/facilitators: The most cited barriers to medication management of OPwID from professionals’ perspective included: limited knowledge of, and training about, ID; nonadherence to guideline recommendation; and lack of coordination between different professionals in multidisciplinary teams. Conclusion/Discussion The review was restricted to two databases and the English language due to resource- and time-constraints. All the included studies were conducted in developed countries with different healthcare settings/practice. As such, the findings might not be generalisable to other less/under-developed countries or settings. There is limited empirical evidence regarding the medication management of OPwID, in particular, facilitators to medicines management from professionals’ perspective. OPwID are a highly vulnerable population for whom medications have an important role in managing their multiple morbidities. This review highlights an evidence gap regarding the medication management of these individuals. The results will be used to inform the development of personalised intervention(s) to improve the safe and effective use of medication in this population. References (1) Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil. 2011 Mar 1;32(2):419-36. (2) Hermans H, Evenhuis HM. Multimorbidity in older adults with intellectual disabilities. Res Dev Disabil. 2014;35(4):776–83.

Association between craniofacial anomalies, intellectual disability and autism spectrum disorder: Western Australian population-based study

BackgroundAccurate knowledge of the relationship between craniofacial anomalies (CFA), intellectual disability (ID) and autism spectrum disorder (ASD) is essential to improve services and outcomes. The aim is to describe the association between CFA, ID and ASD using linked population data.MethodsAll births (1983–2005; n = 566,225) including CFA births (comprising orofacial clefts, craniosynostosis, craniofacial microsomia and mandibulofacial dysostosis) surviving to 5 years were identified from the birth, death, birth defects and midwives population data sets. Linked data from these data sets were followed for a minimum of 5 years from birth until 2010 in the intellectual disability database to identify ID and ASD. These associations were examined using a modified Poisson regression.ResultsPrevalence of ID and ASD was higher among CFA (especially with additional anomalies) than those without [prevalence ratio 5.27, 95% CI 4.44, 6.25]. It was higher among CFA than those with other gastrointestinal and urogenital anomalies but lower than nervous system and chromosomal anomalies. Children with CFA and severe ID had a higher proportion of nervous system anomalies.ConclusionsFindings indicate increased ID and ASD among CFA but lower than nervous system and chromosomal anomalies. This population evidence can improve early identification of ID/ASD among CFA and support service planning.ImpactOur study found about one in ten children born with craniofacial anomalies (CFA) are later identified with intellectual disability (ID).Prevalence of ID among CFA was higher than those with other gastrointestinal, urogenital, and musculoskeletal birth defects but lower than those with the nervous system and chromosomal abnormalities.Most children with craniofacial anomalies have a mild-to-moderate intellectual disability with an unknown aetiology.On average, intellectual disability is identified 2 years later for children born with non-syndromic craniofacial anomalies than those with syndromic conditions.Our findings can improve the early identification of ID/ASD among CFA and support service planning.

Prevalence of intellectual disability in India: A meta-analysis.

BACKGROUNDBurden due to intellectual disability (ID) is only third to the depressive disorders and anxiety disorders in India. This national burden significantly contributes to the global burden of ID and hence one has to think globally and act locally to reduce this burden. At its best the collective prevalence of ID is in the form of narrative reviews. There is an urgent need to document the summary prevalence of ID to enhance further policymaking, national programs and resource allocation.AIMTo establish the summary prevalence of ID during the past 60 years in India. METHODSTwo researchers independently and electronically searched PubMed, Scopus, and the Cochrane library from January 1961 to December 2020 using appropriate search terms. Two other investigators extracted the study design, setting, participant characteristics, and measures used to identify ID. Two other researchers appraised the quality of the studies using the Joanna Briggs Institute critical appraisal format for Prevalence Studies. Funnel plot and Egger’s regression test were used to ascertain the publication and small study effect on the prevalence. To evaluate the summary prevalence of ID, we used the random effects model with arcsine square-root transformation. Heterogeneity of I2 ≥ 50% was considered substantial and we determined the heterogeneity with meta-regression. The analyses were performed using STATA (version 16). RESULTSNineteen studies were included in the meta-analysis. There was publication bias; the trim-and-fill method was used to further ascertain bias. Concerns with control of confounders and the reliable measure of outcome were noted in the critical appraisal. The summary prevalence of ID was 2% [(95%CI: 2%, 3%); I2 = 98%] and the adjusted summary prevalence was 1.4%. Meta-regression demonstrated that age of the participants was statistically significantly related to the prevalence; other factors did not influence the prevalence or heterogeneity.CONCLUSIONThe summary prevalence of ID in India was established to be 2% taking into consideration the individual prevalence studies over the last six decades. This knowledge should improve the existing disability and mental health policies, national programs and service delivery to reduce the national and global burden associated with ID.

Commentary: The origins of intellectual disability.

Despite the importance and prevalence of intellectual disability (ID), its origins have not been well understood until now. Lichtenstein et al. report in this issue findings from a population‐based sample four times larger than all previous family studies of ID put together (Lichtenstein et al., 2022). From more than four million people, 37,787 individuals were identified with ID. Relative risks (RRs) are reported for relatives of ID probands (55,000 first‐degree, 55,000 second‐degree, and 170,000 third‐degree) as compared with matched relatives of individuals without ID. These relatives plus 400 pairs of twins in which at least one twin was diagnosed with ID yield an astonishing estimate of 95% heritability with no evidence for shared environmental influence in their model. Another important finding is that maternal half‐siblings of ID individuals were at greater risk than paternal half‐siblings, a maternal effect that could indicate X‐chromosome linkage. Finally, profound and severe ID is etiologically distinct from the normal distribution, due in part to noninherited (de novo) genetic mutations and chromosomal abnormalities. However, 90% of individuals with ID are moderate or mild, and these represent the low end of the normal distribution of genetic influence on cognitive ability, which has important implications for DNA research on ID.

Significant regional inequalities in the prevalence of intellectual disability and trends from 1990 to 2019: a systematic analysis of GBD 2019.

Policymakers and researchers have little evidence on prevalence rates of intellectual disability (ID) or their changes over time to tailor healthcare interventions. Prevalence rates and trends of ID are especially lacking in regions with lower socio-demographic development. Additionally, the assessment of inequalities in the prevalence of ID across regions with varying socio-demographic development is understudied. This study assessed variations in prevalence rates of ID from 1990 to 2019 and the related inequalities between low and high socio-demographic index (SDI) regions. This study used global data from 1990 to 2019 for individuals with ID from the 2019 Global Burden of Diseases study. Data analyses were performed from September 2021 to January 2022. Prevalence for individuals with ID was extracted by sex, age groups and SDI regions. Annual percentage change (APC) was estimated for each demographic group within SDI regions to assess their prevalence trends over 30 years. Relative and absolute inequalities were calculated between low and high SDI regions for the various age groups. In 2019, there were 107.62 million (1.74%) individuals with ID, with an APC of -0.80 (-0.88 to -0.72). There was a slightly higher prevalence among males (1.42%) than females (1.37%). The highest prevalence rates were found in the low-middle SDI regions (2.42%) and the lowest prevalence rates were in the high SDI regions (0.33%). There was a large reduction in the prevalence rate between the youngest age group v. the oldest age group in all the SDI regions and at all time points. The relative inequalities between low and high SDI regions increased over three decades. While an overall decrease in global prevalence rate for ID was found, relative inequalities continue to increase with lower SDI regions needing more comprehensive support services. The demographic trends indicate a significantly higher mortality rate among those with ID v. the rest of the population. Our study highlights the necessity for policies and interventions targeting lower SDI regions to mobilise resources that better support individuals with ID and achieve sustainable development goals proposed by the United Nations.