Amenable deaths among adults with intellectual and developmental disabilities including Down syndrome: An Ontario population-based cohort study.

BACKGROUND: Rates of death and avoidable deaths are reportedly higher among people with intellectual and developmental disabilities. This study contributes to our understanding of how mortality and intellectual and development disabilities are associated. METHOD: General population and intellectual and developmental disabilities adult cohorts were defined using linked administrative data. All-cause and amenable deaths between 2010 and 2015 were reported for these cohorts and subcohorts with and without Down syndrome. Cox proportional hazards models evaluated the impact of potential contributors to amenable deaths. RESULTS: Adults with intellectual and developmental disabilities had higher all-cause (6.1 vs. 1.6%) and amenable death percentages (21.4 vs. 14.1%) than general population comparators. Within intellectual and developmental disabilities, those with Down syndrome had higher all-cause (12.0 vs. 6.0%) but lower amenable death percentages (19.2 vs. 21.8%) than those without. CONCLUSIONS: Results suggest that interventions to reduce amenable deaths target provider-care-recipient interactions and coordination across care and support sectors.

Matching Special Olympics registration data with administrative health databases: Feasibility and health status differences in children and youth with IDD.

BACKGROUND: Children and youth with intellectual and developmental disabilities (IDD) experience health disparities. What is unknown is if data collected from children and youth with IDD who participate in Special Olympics is representative of children and youth with IDD who do not. OBJECTIVES: Aim 1: determine the feasibility of matching a database of registrants from Special Olympics Ontario (SOO), with population-based health services databases in Ontario, Canada housed at ICES. Aim 2: evaluate the differences between the database sources with regards to demographic variables and clinical status. METHODS: Using deterministic and probabilistic matching, registration data from SOO were matched to administrative health databases. Established algorithms were used to determine the prevalence of asthma, diabetes, and mental disorder in addition to demographic variables. RESULTS: The matching rate was over 90%; 8404 were attributed to children and youth between the ages of 0-19 years. When comparing SOO participants with IDD to non-SOO participants with IDD, children and youth who participate in SOO were, on average, older with no further differences between groups on clinical or demographic variables. When comparing those previously not identified in the health services databases (from SOO) to those with IDD identified by ICES, the SOO participants appear to use the health system less, possibly indicating a better health status. CONCLUSIONS: Research conducted on child and youth who participate in Special Olympics Ontario can be generalized to the broader population of children and youth with IDD in Canada when adjusted for age; however, care should be taken when comparing levels of overall morbidity.

Psychiatric disorders in adults with cerebral palsy.

BACKGROUND: Cerebral palsy (CP) is one of the most common neurological conditions in childhood. Individuals with CP often experience various secondary conditions, including intellectual disability (ID), medical conditions, and psychiatric issues. A large number of youth with CP have psychiatric disorders; however, few studies have examined the prevalence of psychiatric issues in adults with CP at the population-level. AIMS: To investigate the prevalence and co-occurrence of psychiatric disorders at the population-level in adults with CP only, and adults with CP and ID. METHOD AND PROCEDURES: Using clinical information from seven Canadian data sources, we conducted a retrospective cross-sectional analysis of adults with CP, with and without ID. OUTCOMES AND RESULTS: Adults with CP were more likely than the general population to have a psychiatric diagnosis, independent of ID status. All psychiatric disorders were more common in individuals with CP than the general population, with the exception of addiction related disorders. In most cases, having an ID substantially increased the risk of having a psychiatric disorder. CONCLUSIONS: Adults with CP are at heightened risk for experiencing psychiatric disorders. Current findings highlight the important role health care providers play in screening for psychiatric issues in individuals with CP.

Looking across health and healthcare outcomes for people with intellectual and developmental disabilities and psychiatric disorders: population-based longitudinal study.

BACKGROUND: Intellectual and developmental disabilities (IDDs) and psychiatric disorders frequently co-occur. Although each has been associated with negative outcomes, their combined effect has rarely been studied. AIMS: To examine the likelihood of five negative health and healthcare outcomes for adults with IDD and mental health/addiction disorders (MHAs), both separately and together. For each outcome, demographic, clinical and system-level factors were also examined. METHOD: Linked administrative data-sets were used to identify adults in Ontario, Canada, with IDD and MHA (n = 29 476), IDD-only (n = 35 223) and MHA-only (n = 727 591). Five outcomes (30-day readmission, 30-day repeat ED visit, delayed discharge, long-term care admission and premature mortality) were examined by logistic regression models with generalised estimating equation or survival analyses. For each outcome, crude (disorder groups only) and complete (adding biosocial covariates) models were run using a general population reference group. RESULTS: The IDD and MHA group had the highest proportions across outcomes for both crude and complete models. They had the highest adjusted ratios for readmissions (aOR 1.93, 95%CI 1.88-1.99), repeat ED visit (aOR 2.00, 95%CI 1.98-2.02) and long-term care admission (aHR 12.19, 95%CI 10.84-13.71). For delayed discharge, the IDD and MHA and IDD-only groups had similar results (aOR 2.00 (95%CI 1.90-2.11) and 2.21 (95%CI 2.07-2.36). For premature mortality, the adjusted ratios were similar for all groups. CONCLUSIONS: Poorer outcomes for adults with IDD, particularly those with MHA, suggest a need for a comprehensive, system-wide approach spanning health, disability and social support.

Repeat Emergency Department Visits for Individuals With Intellectual and Developmental Disabilities and Psychiatric Disorders.

Although individuals with intellectual and developmental disabilities (IDD) and psychiatric concerns are more likely than others to visit hospital emergency departments (EDs), the frequency of their returns to the ED within a short time is unknown. In this population-based study we examined the likelihood of this group returning to the ED within 30 days of discharge and described these visits for individuals with IDD + psychiatric disorders (n = 3,275), and persons with IDD only (n = 1,944) compared to persons with psychiatric disorders only (n = 41,532). Individuals with IDD + psychiatric disorders, and individuals with IDD alone were more likely to make 30-day repeat ED visits. Improving hospital care and postdischarge community linkages may reduce 30-day returns to the ED among adults with IDD.

Validity of proxy-reported height and weight to derive body mass index in adults participating in Special Olympics.

BACKGROUND: Overweight and obesity are common in adults with intellectual disabilities, which complicates their health. To meet their health needs, individuals with intellectual disability frequently rely on proxies to answer questions on their behalf. In the general population, the use of proxy-reported height and weight to compute body mass index (BMI) has been validated, but not among adults with intellectual disability. The objective of this study was to determine the accuracy of proxy-reported height, weight and derived BMI among adults with intellectual disability. METHODS: Proxies were asked to report height and weight on behalf of adults with intellectual disability who participate in Special Olympics Ontario; their answers were compared to measured height and weight. RESULTS: Proxies reported height and weight accurately; the sensitivity of proxy reports for classifying individuals with intellectual disability as overweight and/or obese was 84.6%. CONCLUSION: Proxy reports may be useful when direct measurements of individuals with intellectual disability are not available.

All-Cause, 30-Day Readmissions Among Persons With Intellectual and Developmental Disabilities and Mental Illness.

OBJECTIVE: Early hospital readmissions within 30 days of discharge are common and costly. This research describes predictors of all-cause, 30-day hospital readmissions among persons with intellectual and developmental disabilities (IDD), a group known to experience high rates of hospitalization. METHODS: A cohort of 66,484 adults with IDD from Ontario, Canada, was used to create two subgroups: individuals with IDD only and those with IDD and mental illness. The rates of hospital readmission were determined and contrasted with a comparison subgroup of people without IDD who have mental illness. RESULTS: Compared with those with mental illness only, individuals with IDD and mental illness were 1.7 times more likely to experience a hospital readmission within 30 days. Predictors of their readmission rates included being a young adult and having high morbidity levels. CONCLUSIONS: The high rate of hospital readmission suggests that individuals with IDD and mental illness need attention regarding discharge planning and outpatient follow-up.

Substance-related and addictive disorders among adults with intellectual and developmental disabilities (IDD): an Ontario population cohort study.

OBJECTIVES: Describe the prevalence of substance-related and addictive disorders (SRAD) in adults with intellectual and developmental disabilities (IDD) and compare the sociodemographic and clinical characteristics of adults with IDD and SRAD to those with IDD or SRAD only. DESIGN: Population-based cohort study (the Health Care Access Research and Development Disabilities (H-CARDD) cohort). SETTING: All legal residents of Ontario, Canada. PARTICIPANTS: 66 484 adults, aged 18-64, with IDD identified through linked provincial health and disability income benefits administrative data from fiscal year 2009. 96 589 adults, aged 18-64, with SRAD but without IDD drawn from the provincial health administrative data. MAIN OUTCOME MEASURES: Sociodemographic (age group, sex, neighbourhood income quintile, rurality) and clinical (psychiatric and chronic disease diagnoses, morbidity) characteristics. RESULTS: The prevalence of SRAD among adults with IDD was 6.4%, considerably higher than many previous reports and also higher than found for adults without IDD in Ontario (3.5%). Among those with both IDD and SRAD, the rate of psychiatric comorbidity was 78.8%, and the proportion with high or very high overall morbidity was 59.5%. The most common psychiatric comorbidities were anxiety disorders (67.6%), followed by affective (44.6%), psychotic (35.8%) and personality disorders (23.5%). These adults also tended to be younger and more likely to live in the poorest neighbourhoods compared with adults with IDD but no SRAD and adults with SRAD but no IDD. CONCLUSIONS: SRAD is a significant concern for adults with IDD. It is associated with high rates of psychiatric and other comorbidities, indicating that care coordination and system navigation may be important concerns. Attention should be paid to increasing the recognition of SRAD among individuals with IDD by both healthcare and social service providers and to improving staff skills in successfully engaging those with both IDD and SRAD.