The prevalence of intellectual disabilities is often quoted at 1 %. A meta-analysis of articles published between 1980 and 2009 confirmed this prevalence. Changes in diagnostic practices, population characteristics, and exposure to known risk factors in recent years place this estimate in question and make it imperative to examine more recent studies of prevalence and incidence. Twenty relevant articles were obtained from five databases (PubMed, Embase, PsycInfo, Cochrane, and MEDLINE), published between 2010 and 2015. Most studies (n = 17) only reported prevalence estimates, while two provided incidence estimates. Various methodologies were applied, with the majority of studies (n = 16) using administrative data. Heterogeneity in study settings, methodologies, age groups, and case definitions contributed to a range of prevalence estimates (0.05 to 1.55 %). Future research should include reproducible and consistent definitions of intellectual disabilities, provide age-specific estimates, and monitor changes in prevalence over time.

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Systematic Review of the Prevalence and Incidence of Intellectual Disabilities: Current Trends and Issues

Objective To update the 2011 Canadian guidelines for primary care of adults with intellectual and developmental disabilities (IDD). Methods Family physicians and other health professionals experienced in the care of people with IDD reviewed and synthesized recent empirical, ecosystem, expert, and experiential knowledge. A system was developed to grade the strength of recommendations. Recommendations Adults with IDD are a heterogeneous group of patients and have health conditions and factors affecting their health that can vary in kind, manifestation, severity, or complexity from those of others in the community. They require approaches to care and interventions that are adapted to their needs. These guidelines provide advice regarding standards of care. References to clinical tools and other practical resources are incorporated. The approaches to care that are outlined here can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning. Conclusion As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. These guidelines can aid their decision making with patients and caregivers.

https://www.cfp.ca/content/cfp/64/4/254.full.pdf

Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines.

Age-related deficit accumulation and the diseases of ageing.

BACKGROUND: Estimates of children and adolescents with disabilities worldwide are needed to inform global intervention under the disability-inclusive provisions of the Sustainable Development Goals. We sought to update the most widely reported estimate of 93 million children METHODS: We analyzed Global Burden of Disease Study 2017 data on the prevalence of childhood epilepsy, intellectual disability, and vision or hearing loss and on years lived with disability (YLD) derived from systematic reviews, health surveys, hospital and claims databases, cohort studies, and disease-specific registries. Point estimates of the prevalence and YLD and the 95% uncertainty intervals (UIs) around the estimates were assessed. RESULTS: Globally, 291.2 million (11.2%) of the 2.6 billion children and adolescents (95% UI: 249.9–335.4 million) were estimated to have 1 of the 4 specified disabilities in 2017. The prevalence of these disabilities increased with age from 6.1% among children aged CONCLUSIONS: The number of children and adolescents with these 4 disabilities is far higher than the 2004 estimate, increases from infancy to adolescence, and accounts for a substantial proportion of all-cause YLD.

https://pediatrics.aappublications.org/content/pediatrics/early/2020/06/15/peds.2019-2623.full.pdf

Global Burden of Childhood Epilepsy, Intellectual Disability, and Sensory Impairments

The lives of persons living with mental illness are affected by psychological, biological, social, economic, and environmental factors over the life course. It is therefore unlikely that simple preventive strategies, clinical treatments, therapeutic interventions, or policy options will succeed as singular solutions for the challenges of mental illness. Persons living with mental illness receive services and supports in multiple settings across the health care continuum that are often fragmented, uncoordinated, and inadequately responsive. Appropriate assessment is an important tool that health systems must deploy to respond to the strengths, preferences, and needs of persons with mental illness. However, standard approaches are often focused on measurement of psychiatric symptoms without taking a broader perspective to address issues like growth, development, and aging; physical health and disability; social relationships; economic resources; housing; substance use; involvement with criminal justice; stigma; and recovery. Using conglomerations of instruments to cover more domains is impractical, inconsistent, and incomplete while posing considerable assessment burden. interRAI mental health instruments were developed by a network of over 100 researchers, clinicians, and policy experts from over 35 nations. This includes assessment systems for adults in inpatient psychiatry, community mental health, emergency departments, mobile crisis teams, and long-term care settings, as well as a screening system for police officers. A similar set of instruments is available for child/youth mental health. The instruments form an integrated mental health information system because they share a common assessment language, conceptual basis, clinical emphasis, data collection approach, data elements, and care planning protocols. The key applications of these instruments include care planning, outcome measurement, quality improvement, and resource allocation. The composition of these instruments and psychometric properties are reviewed, and examples related to homeless are used to illustrate the various applications of these assessment systems.

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The interRAI Suite of Mental Health Assessment Instruments: An Integrated System for the Continuum of Care.

The aging population of adults with intellectual and developmental disabilities (IDD) is growing. In the general aging population, frailty is commonly used to predict adverse health outcomes, including hospital use, death, and admission to long-term care. However, existing frailty measures are less appropriate for aging persons with IDD, given their pre-existing conditions and limitations. An accumulation of deficits approach, which is now widely used to describe frailty in the general population, may be more suitable for persons with IDD. Frailty measures specific to persons with IDD have not been widely studied. Using pre-determined criteria, a frailty index (FI) specific to persons with IDD was developed based on items in the Resident Assessment Instrument - Home Care (RAI-HC), and using the assessments of 7,863 individuals with IDD in Ontario (aged 18–99 years) admitted to home care between April 1st, 2006 and March 31st, 2014. FI scores were derived by dividing deficits present by deficits measured, and categorized into meaningful strata using stratum-specific likelihood ratios. A multinomial logistic regression model identified associations between frailty and individual characteristics. The resulting FI is comprised of 42 deficits across five domains (physiological, psychological, cognitive, social and service use). The mean FI score was 0.22 (SD = 0.13), equivalent to 9 deficits. Over half of the cohort was non-frail (FI score   0.30). Controlling for individual characteristics, women were more likely to be frail compared to men (OR = 1.39, 95 % CI: 1.23–1.56). Individuals who were frail were significantly more likely to have a caregiver who was unable to continuing caring (OR = 1.86, 95 % CI: 1.55–2.22) or feeling distressed (OR = 1.54, 95 % CI: 1.30–1.83). Living with a family members was significantly protective of frailty (OR = 0.35, 95 % CI: 0.29–0.41), compared to living alone. Using the FI to identify frailty in adults with IDD is feasible and can be incorporated into existing home care assessments. This could offer case managers assistance in identifying at-risk individuals. Future analyses should evaluate this measure’s ability to predict future adverse outcomes.

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Using an accumulation of deficits approach to measure frailty in a population of home care users with intellectual and developmental disabilities: an analytical descriptive study

Background

The transition period out of the educational system can be a source of stress for parents of young adults with intellectual and developmental disabilities, as families lose the support and respite offered by schools.



Materials and Methods

Using a before and after design nested within a 24-month follow-up study of parents seeking adult developmental services for their children, parents' perception of distress was measured using the Brief Family Distress Scale (Journal of Child and Family Studies, 20, 2011, 521) and their perception of helpfulness of formal supports was assessed using the Family Support Scale (Journal of Individual, Family, and Community Wellness, 1, 1984, 45).



Results

Parents reported significantly higher levels of distress after their child transitioned out of school. Employed parents and parents of a child with an autism spectrum disorder are at increased risk for distress.



Conclusions

Families fare worse once their adult children are no longer in school, although this is not associated with a reduction in the perception of the helpfulness of formal supports.

Out of School and Into Distress: Families of Young Adults with Intellectual and Developmental Disabilities in Transition

Increasing life expectancy, shifts to supporting people with intellectual and developmental disabilities in the community, their increased vulnerability to poor health, and the need for greater accountability call for more than occasional studies of aging in this population. Ongoing monitoring of health indicators is feasible in various capacities in different jurisdictions. In this chapter, we first situate the literature about aging with intellectual and developmental disabilities in the context of aging in the general population, and identify key indicators for consideration in health surveillance in older adults with intellectual and developmental disabilities. We then report on a population-based study in Ontario, Canada, which confirms earlier reports of increasing numbers of older adults with intellectual and developmental disabilities, premature aging in this population, and expected trends in use of home care and admission to long-term care. The review concludes with recommendations for future surveillance activities in Ontario and beyond. Concerned researchers should partner with knowledge users/decision-makers to maximize the use of electronic administrative and clinical data available to them. In time, the international research community may identify common indicators and methods thereby generating comparators across systems that can further inform policy development.

A Review of Health Surveillance in Older Adults with Intellectual and Developmental Disabilities

Adults with intellectual and developmental disabilities often experience premature aging and high levels of frailty. Frailty characterizes health complexities and identifies adults with increased risks for adverse outcomes. This paper compared the prevalence of frailty amongst adults (aged 18–99 years) with and without intellectual and developmental disabilities. Frailty was measured using the Frailty Marker, based on the Adjusted Clinical Groups-Predicative Model, and was compared between a cohort of 51,138 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual developmental disabilities. Approximately 9% of persons with intellectual and developmental disabilities were frail, compared to only 3% of persons without intellectual and developmental disabilities. Women, older adults, and adults with mental illness or addiction(s), were more likely to be frail. Adults with intellectual and developmental disabilities are increasingly vulnerable as they age. However, to appropriately characterize frailty in this population, measures should be more inclusive of health characteristics and fluctuations that are related to frailty. Future research should investigate alternative measures of frailty for persons with intellectual and developmental disabilities, including measures derived from standardized health assessments, to meet the needs of the aging population.

Katherine McKenzie

Papers

Systematic Review of the Prevalence and Incidence of Intellectual Disabilities: Current Trends and Issues

Using an accumulation of deficits approach to measure frailty in a population of home care users with intellectual and developmental disabilities: an analytical descriptive study

Out of School and Into Distress: Families of Young Adults with Intellectual and Developmental Disabilities in Transition

A Review of Health Surveillance in Older Adults with Intellectual and Developmental Disabilities

Applying a General Measure of Frailty to Assess the Aging Related Needs of Adults with Intellectual and Developmental Disabilities