Fetal alcohol syndrome and population level health care usage in British Columbia, Canada.

BACKGROUND: The literature indicates that youth with Fetal Alcohol Syndrome (FAS) may experience high rates of both physical and mental health issues compared to youth without FAS. However, there is little population level health data available for youth with FAS, particularly for youth transitioning from pediatric to adult healthcare services. OBJECTIVE: The objective of this study was to compare health care usage of youth with Fetal Alcohol Syndrome to youth without any intellectual/developmental disabilities (IDD). METHODS: This study used a retrospective cohort design and population-level administrative health data to examine five aspects of health care usage by youth with FAS and compare them to youth with no intellectual/developmental disability. The variables were medically required dental care, visits to emergency departments and visits for mental health issues. In addition, the study stratified data by age groups and examined the difference between youth aged 15-19 and youth aged 20-24. RESULTS: Youth with FAS had higher adjusted odds of medically required dental care, visits to the emergency department and visits for anxiety/depression, psychotic illnesses and substance use disorders compared to youth with no IDD. The odds of a medically required dental visit, emergency department visit and visit for psychotic illness or substance use disorder were also higher for youth aged 20-24 years compared to youth aged 15-19 years. CONCLUSIONS: These findings indicate that youth with FAS require urgent attention for each of the medically-related variables included in this study. The need for attention to their health care needs may increase as these youth transition from pediatric to adult health care services.

Brief Report: A population-based study of the impact of the COVID-19 pandemic on benzodiazepine use among children and young adults.

The COVID-19 pandemic was associated with increases in the prevalence of depression and anxiety among children and young adults. We studied whether the pandemic was associated with changes in prescription benzodiazepine use. We conducted a population-based study of benzodiazepine dispensing to children and young adults ≤ 24 years old between January 1, 2013, and June 30, 2022. We used structural break analyses to identify the pandemic month(s) when changes in prescription benzodiazepine dispensing occurred, and interrupted time series models to quantify changes in dispensing following the structural break and compare observed and expected benzodiazepine use. A structural break occurs where there is a sudden change in the trend of a time series. We observed an immediate decline in benzodiazepine dispensing of 23.6 per 100,000 (95% confidence interval [CI]: -33.6 to -21.2) associated with a structural break in April 2020, followed by a monthly decrease in the trend of 0.3 per 100,000 (95% CI: -0.74 to 0.14). Lower than expected benzodiazepine dispensing rates were observed each month of the pandemic from April 2020 onward, with relative percent differences ranging from - 7.4% (95% CI: -10.1% to - 4.7%) to -20.9% (95% CI: -23.2% to -18.6%). Results were generally similar in analyses stratified by sex, age, neighbourhood income quintile, and urban versus rural residence. Further research is required to understand the clinical implications of these findings and whether these trends were sustained with further follow-up.

The impact of a virtual wellness course for adults with intellectual and developmental disabilities in the third year of COVID-19.

The current study examines how a virtual wellness intervention may improve health outcomes in adults with intellectual and developmental disabilities. Thirty-six adults with intellectual and developmental disabilities participated in the wellness intervention. Outcome measures related to satisfaction, mental health, wellbeing, health behaviours and overall health were completed at three time points (pre, post and follow-up). Participants reported high levels of satisfaction and had significant improvements in outcomes related to mental health and wellbeing. Changes in sleep, sedentary behaviour and overall health were not reported, though qualitative evidence suggests that some changes were implemented. The study provides evidence to support the use of virtual interventions to address health concerns in individuals with intellectual and developmental disabilities.

Bridging the gap: national virtual education programme for professionals caring for adults with intellectual and developmental disabilities at the time of COVID-19.

BACKGROUND: The COVID-19 pandemic significantly impacted the mental health of adults with intellectual and developmental disabilities (IDD). During this period of uncertainty and need for up-to-date information, various virtual training programmes demonstrated the role of tele-mentoring programmes. AIM: The aim of this paper is to describe the educational evaluation of the National Extension for Community Healthcare Outcomes - Adults with Intellectual and Developmental Disabilities (ECHO-AIDD), a programme for service providers working with adults with IDD during COVID-19. METHOD: The programme consisted of six sessions, conducted weekly, over two cycles. Each session included didactic teaching by hub team members, COVID-19 news updates, wellness check-ins and a brief mindfulness activity, followed by a 30 to 45 min case-based discussion. The hub structure had an inter-professional approach to team expertise. Those with lived experience were an integral part of the content experts' hub. Pre-, post- and follow-up evaluation data were collected. RESULTS: Care providers from health and social care sectors (n = 230) participated in the programme. High levels of engagement and satisfaction were reported. Self-efficacy ratings improved from pre- to post-, and were maintained at 8-week follow-up; improvement from pre- to post- was significant (P < 0.0001). CONCLUSION: Exposure to National ECHO-AIDD educational intervention led to improvement in perceived competencies. This study also shows the valuable role of people with lived experience in fostering adaptive expertise in learners. The outreach and scalability support the feasibility of building a national virtual community of practice for IDD service providers. Future studies should focus on studying the impact of these programmes on the health outcomes of people with IDD.

Prescription Medication Use in Pregnancy in People with Disabilities: A Population-Based Cohort Study.

Background: Individuals with disabilities may require specific medications in pregnancy. The prevalence and patterns of medication use, overall and for medications with known teratogenic risks, are largely unknown. Methods: This population-based cohort study in Ontario, Canada, 2004-2021, comprised all recognized pregnancies among individuals eligible for public drug plan coverage. Included were those with a physical (n = 44,136), sensory (n = 13,633), intellectual or developmental (n = 2,446) disability, or multiple disabilities (n = 5,064), compared with those without a disability (n = 299,944). Prescription medication use in pregnancy, overall and by type, was described. Modified Poisson regression generated relative risks (aRR) for the use of medications with known teratogenic risks and use of ≥2 and ≥5 medications concurrently in pregnancy, comparing those with versus without a disability, adjusting for sociodemographic and clinical factors. Results: Medication use in pregnancy was more common in people with intellectual or developmental (82.1%), multiple (80.4%), physical (73.9%), and sensory (71.9%) disabilities, than in those with no known disability (67.4%). Compared with those without a disability (5.7%), teratogenic medication use in pregnancy was especially higher in people with multiple disabilities (14.2%; aRR 2.03, 95% confidence interval [CI]: 1.88-2.20). Furthermore, compared with people without a disability (3.2%), the use of ≥5 medications concurrently was more common in those with multiple disabilities (13.4%; aRR 2.21, 95% CI: 2.02-2.41) and an intellectual or developmental disability (9.3%; aRR 2.13, 95% CI: 1.86-2.45). Interpretation: Among people with disabilities, medication use in pregnancy is prevalent, especially for potentially teratogenic medications and polypharmacy, highlighting the need for preconception counseling/monitoring to reduce medication-related harm in pregnancy.

Impact of COVID-19 on psychoactive medication use among individuals with intellectual and developmental disabilities in Ontario, Canada: A repeated cross-sectional study.

BACKGROUND: Evidence for worsening mental health among individuals with intellectual and developmental disabilities (IDD) during COVID-19 sparked concerns for increased use of psychoactive medications. OBJECTIVE: To examine the impact of COVID-19 on psychoactive medication use and clinical monitoring among individuals with IDD in Ontario, Canada. METHODS: We conducted a repeated cross-sectional study among individuals with IDD and examined weekly trends for psychoactive medication dispensing and outpatient physician visits among those prescribed psychoactive medications between April 7, 2019, and March 25, 2023. We used interventional autoregressive integrated moving average models to determine the impact of the declaration of emergency for COVID-19 (March 17, 2020) on the aforementioned trends. RESULTS: The declaration of emergency for COVID-19 did not significantly impact psychoactive medication use among individuals with IDD. Provision of clinical monitoring remained relatively stable, apart from a short-term decline in the weekly rate of outpatient physician visits following the declaration of emergency for COVID-19 (step estimate: 21.26 per 1000 individuals [p < 0.01]; ramp estimate: 0.88 per 1000 individuals [p = 0.01]). When stratified by mode of delivery, there was a significant shift towards virtual care (step estimate: 78.80 per 1000 individuals; p < 0.01). The weekly rate of in-person physician visits gradually increased, returning to rates observed prior to the COVID-19 pandemic in January 2023. CONCLUSION: Although access to clinical care remained relatively stable, the shift towards virtual care may have negatively impacted those who encounter challenges communicating via virtual mediums. Future research is required to identify the support systems necessary for individuals with IDD during virtual health care interactions.

Participation in Special Olympics reduces the rate for developing diabetes in adults with intellectual and developmental disabilities.

AIM: Adults with intellectual and developmental disabilities (IDD) have a significantly higher prevalence of Type 2 diabetes than the general population. Evidence that lifestyle and/or behavioural interventions, such as participation in Special Olympics, decreases the risk of developing diabetes in adults with IDD could help minimize health disparities and promote overall health in this population. METHODS: This was a 20-year retrospective cohort study of adults with IDD (30-39 years) in the province of Ontario, Canada, that compared hazard rates of diabetes among Special Olympics participants (n = 4145) to non-participants (n = 31,009) using administrative health databases housed at ICES. Using cox proportional hazard models, crude and adjusted hazard ratios were calculated for the association between the primary independent variable (Special Olympics participation status) and the dependent variable (incident diabetes cases). RESULTS: After controlling for other variables, the hazard ratio comparing rates for developing diabetes between Special Olympics participants and non-participants was 0.85. This represents a 15% reduction in the hazard among Special Olympics participants when followed for up to 20 years. This result was statistically significant and represents a small effect size. CONCLUSIONS: Special Olympics could be considered a complex intervention that promotes physical activity engagement through sport participation, health screenings, and the promotion of healthy eating habits through educational initiatives. This study provides evidence that Special Olympics participation decreases the rate for developing diabetes.

Prescriptions for Antipsychotics: Youth with Intellectual/Developmental Disabilities Compared to Youth without Intellectual/Developmental Disabilities.

PURPOSE: The purpose of this study was to compare antipsychotic use by youth with intellectual/developmental disabilities to youth without IDD as they transitioned from pediatric to adult health care services. In addition, antipsychotic use was compared between youth with different types of IDD (autism, Fetal Alcohol Syndrome, Down syndrome and 'other'). METHODS: Population level administrative health data was used to compare the dispensing of antipsychotics for youth aged 15 to 24 years with and without IDD, between 2010 and 2019. Because antipsychotics are associated with metabolic syndrome and type 2 diabetes, we also examined the dispensing data for metformin. In addition, we examined dispensed antipsychotics between different types of IDD. For both dispensing of antipsychotics and metformin, we used multi-variable logistic regression to derive adjusted odds ratios. RESULTS: There were 20,591 youth with IDD and 1,293,791 youth without IDD. Youth with IDD had significantly higher odds of being dispensed an antipsychotic (7.13 (6.82, 7.44)), even when a diagnosis of a psychotic illness was included in the regression. Higher odds were found in all age groups. Youth with IDD also had significantly higher odds of being dispensed metformin (3.739 (3.323, 4.208)) compared to youth without IDD. Youth with autism, FAS and 'other' types of IDD diagnoses all had higher odds of being dispensed an antipsychotic compared to youth with Down syndrome. CONCLUSION: Compared to youth without IDD, youth with IDD were more frequently dispensed antipsychotics and metformin. These findings have important implications for the health of youth with IDD.

The feasibility of an adapted virtual mindfulness intervention for Special Olympics athletes and their caregivers.

BACKGROUND: Virtual mindfulness may be helpful for individuals with intellectual disabilities in the context of COVID-related disruptions of in-person programming, such as Special Olympics (SO). This study examined the feasibility of a virtual mindfulness intervention for SO athletes and their caregivers. METHOD: SO athletes (n = 44) and their caregivers (n = 29) participated in a 6-week adapted virtual mindfulness intervention. Athletes completed mindfulness and well-being questionnaires prior to, immediately following, and 3-months post-intervention. Caregivers completed questionnaires assessing their own stress, mindfulness, and well-being, as well as athlete mental health. Exit interviews were conducted immediately following the intervention. RESULTS: The intervention was feasible in terms of demand, implementation, acceptability, and limited testing efficacy. There were significant improvements in athlete well-being and mental health, and caregiver stress and mindfulness post-intervention. CONCLUSIONS: Adapted virtual mindfulness groups may be an effective intervention in improving the well-being of adults with intellectual disabilities and their caregivers.

The Power of Partnerships to Identify and Address Mental Health Concerns Experienced by Adults With Intellectual and Developmental Disabilities.

There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships.

Population Level Mental Health Diagnoses for Youth with Intellectual/Developmental Disabilities Compared to Youth without Intellectual/Developmental Disabilities.

There is evidence in the literature that youth with intellectual/developmental disabilities (IDD) experience mental health issues to a greater extent compared to youth without IDD. In addition, transition from pediatric to adult services may be a period of increased anxiety and mental health problems for these youth. This study used a retrospective cohort design using population level administrative health data to compare mental health diagnoses between youth with IDD and youth without IDD; particularly examining the period when youth transition from pediatric health services to adult health services. In addition, this study compared the mental health of youth with various types of IDD (Down syndrome, autism, fetal alcohol syndrome and other rarer diagnoses). Results showed that at the population level youth with IDD have greater odds of anxiety/depression or psychotic illness than youth without IDD. Adjusted odds of anxiety/depression or psychotic illness also varied with age, income level, sex, and type of IDD. Youth with fetal alcohol syndrome had the greatest odds of both anxiety/depression and a psychotic illness. Odds of anxiety/depression increased from age 15-19 years old. Odds of a psychotic illness increased from age 15 to age 24 years old.

Impact of COVID-19 pandemic on prescription stimulant use among children and youth: a population-based study.

COVID-19 associated public health measures and school closures exacerbated symptoms in some children and youth with attention-deficit hyperactivity disorder (ADHD). Less well understood is how the pandemic influenced patterns of prescription stimulant use. We conducted a population-based study of stimulant dispensing to children and youth ≤ 24 years old between January 1, 2013, and June 30, 2022. We used structural break analyses to identify the pandemic month(s) when changes in the dispensing of stimulants occurred. We used interrupted time series models to quantify changes in dispensing following the structural break and compare observed and expected stimulant use. Our main outcome was the change in the monthly rate of stimulant use per 100,000 children and youth. Following an initial immediate decline of 60.1 individuals per 100,000 (95% confidence interval [CI] - 99.0 to - 21.2), the monthly rate of stimulant dispensing increased by 11.8 individuals per 100,000 (95% CI 10.0-13.6), with the greatest increases in trend observed among females, individuals in the highest income neighbourhoods, and those aged 20 to 24. Observed rates were between 3.9% (95% CI 1.7-6.2%) and 36.9% (95% CI 34.3-39.5%) higher than predicted among females from June 2020 onward and between 7.1% (95% CI 4.2-10.0%) and 50.7% (95% CI 47.0-54.4%) higher than expected among individuals aged 20-24 from May 2020 onward. Additional research is needed to ascertain the appropriateness of stimulant use and to develop strategies supporting children and youth with ADHD during future periods of long-term stressors.

Prevalence of Psychotropic Medication Use and Psychotropic Polypharmacy in Autistic Adults With or Without Intellectual Disability.

The aim of this study was to compare the rates of psychotropic medication use and psychotropic polypharmacy between autistic adults with and without intellectual disability (ID) and to examine factors associated with psychotropic medication use and psychotropic polypharmacy in autistic adults, stratified by the presence of ID. We conducted a retrospective medical chart review of outpatients with an autism diagnosis aged 18 years and older. The rates of psychotropic medication use and psychotropic polypharmacy were compared between autistic adults with and without ID. Subsequently, logistic regression analyses were performed to identify factors associated with psychotropic medication use and psychotropic polypharmacy in autistic adults with ID and those without ID, respectively. The rates of prevalence of psychotropic medication use and polypharmacy were significantly higher in participants with ID than those without ID (78.6% vs. 58.8% and 49.3% vs. 31.2%; p-values < 0.05). Age, gender, race, residence, presence of mood disorders, presence of schizophrenia, absence of anxiety disorder, number of psychiatric comorbidities, and presence of behaviors that challenge were significantly associated with these outcomes, depending on the presence/absence of ID. The need to optimize pharmacotherapy in autistic adults, stratifying by the presence of ID, is highlighted.

"Everything has changed since COVID": Ongoing challenges faced by Canadian adults with intellectual disabilities during waves 2 and 3 of the COVID-19 pandemic.

The COVID-19 pandemic has disrupted the lives of people with intellectual disabilities in many ways, impacting their health and wellbeing. Early in the pandemic, the research team delivered a six-week virtual group-based program to help Canadian adults with intellectual disabilities cope and better manage their mental health. The study's objective was to explore ongoing concerns among individuals with intellectual disabilities following their participation in this education and support program. Thematic analysis was used to analyze participant feedback provided eight weeks after course completion. Twenty-four participants were interviewed in January 2021 and May 2021 across two cycles of the course. Three themes emerged: 1) employment and financial challenges; 2) navigating changes and ongoing restrictions; and 3) vaccine anticipation and experience. These findings suggest that despite benefiting from the program, participants continued to experience pandemic-related challenges in 2021, emphasising the need to continually engage people with intellectual disabilities.

Intellectual and developmental disabilities in Ontario's criminal justice and forensic mental health systems: Using data to tell the story.

BACKGROUND: International studies show that adults with intellectual and developmental disabilities (IDD) are disproportionately represented in the criminal justice and forensic mental health systems; however, it is difficult to capture their involvement across systems in any one jurisdiction. AIMS: The current study aimed to estimate the prevalence of IDD across different parts of the criminal justice and forensic mental health systems in Ontario and to describe the demographic and clinical profiles of these individuals relative to their counterparts without IDD. METHODS: This project utilised administrative data to identify and describe the demographic and clinical characteristics of adults with IDD and criminal justice or forensic involvement across four sectors: federal correctional facilities, provincial correctional facilities, forensic inpatient mental health care and community mental health programmes. Questions were driven by and results were contextualised by a project advisory group and people with lived experience from the different sectors studied, resulting in a series of recommendations. RESULTS: Adults with IDD were over-represented in each of the four settings, ranging from 2.1% in federal corrections to 16.7% in forensic inpatient care. Between 20% (forensic inpatient) and 38.4% (provincial corrections) were under the age of 25 and between 34.5% (forensic inpatient) and 41.8% (provincial corrections) resided in the lowest income neighbourhoods. Medical complexity and rates of co-occurring mental health conditions were higher for people with IDD than those without IDD in federal and provincial corrections. CONCLUSIONS: Establishing a population-based understanding of people with IDD within these sectors is an essential first step towards understanding and addressing service and care needs. Building on the perspectives of people who work in and use these systems, this paper concludes with intervention recommendations before, during and after justice involvement.

Parent, child, and family outcomes following Acceptance And Commitment Therapy for parents of autistic children: A randomized controlled trial.

LAY ABSTRACT: Parents of autistic children commonly experience difficulties with their own mental health. This study looked at the effects of a brief group-based Acceptance and Commitment Therapy program, developed for parents of autistic children, youth, and adults. ACT focuses on increasing psychological flexibility, which is the ability to be mindful and accepting of difficult thoughts and experiences, shown to be important for mental wellness. Participants included 54 parents of autistic people, ages 3-34. Parents were randomly divided into two groups: a Treatment group that received the intervention right away, and a Waitlist group that completed the program after the Treatment group completed the trial. All parents filled out questionnaires right before the program began, and at 3, 7, and 17 weeks after randomization. Compared to the group that was waiting to participate in the program, parents in the Treatment group reported greater improvements in depression and family distress, and these improvements were still present 4 months later. Parents in the Treatment group also reported short-term improvements in their positive feelings and personal goals, compared to those waiting. Results showed that ACT may help improve some aspects of mental health for parents of autistic children, but further research is recommended.

The role of thriving in mental health among people with intellectual and developmental disabilities during the COVID-19 pandemic in Canada.

BACKGROUND: The COVID-19 pandemic has had a negative impact on the mental health of people with intellectual and developmental disabilities. Numerous pandemic-related stressors experienced by people with intellectual and developmental disabilities may have impacted their ability to thrive, which has been linked to mental health outcomes. The current study examined the associations among COVID-19 stressors, thriving, and mental health problems among youth and adults with intellectual and developmental disabilities. METHOD: Caregivers of 159 people with intellectual and developmental disabilities between 12 and 35 years of age from Canada completed an online questionnaire. RESULTS: A mediation analysis revealed that COVID-19 stressors were positively associated with mental health problems, and that thriving partially mediated this association. CONCLUSION: Our findings suggest that experiences of thriving may be an important target for mental health support for people with intellectual and developmental disabilities.

Cognition and Educational Achievement in the Toronto Adolescent and Youth Cohort Study: Rationale, Methods, and Early Data.

BACKGROUND: Both cognition and educational achievement in youths are linked to psychosis risk. One major aim of the Toronto Adolescent and Youth (TAY) Cohort Study is to characterize how cognitive and educational achievement trajectories inform the course of psychosis spectrum symptoms (PSSs), functioning, and suicidality. Here, we describe the protocol for the cognitive and educational data and early baseline data. METHODS: The cognitive assessment design is consistent with youth population cohort studies, including the NIH Toolbox, Rey Auditory Verbal Learning Test, Wechsler Matrix Reasoning Task, and Little Man Task. Participants complete an educational achievement questionnaire, and report cards are requested. Completion rates, descriptive data, and differences across PSS status are reported for the first participants (N = 417) ages 11 to 24 years, who were recruited between May 4, 2021, and February 2, 2023. RESULTS: Nearly 84% of the sample completed cognitive testing, and 88.2% completed the educational questionnaire, whereas report cards were collected for only 40.3%. Modifications to workflows were implemented to improve data collection. Participants who met criteria for PSSs demonstrated lower performance than those who did not on numerous key cognitive indices (p < .05) and also had more academic/educational problems. CONCLUSIONS: Following youths longitudinally enabled trajectory mapping and prediction based on cognitive and educational performance in relation to PSSs in treatment-seeking youths. Youths with PSSs had lower cognitive performance and worse educational outcomes than youths without PSSs. Results show the feasibility of collecting data on cognitive and educational outcomes in a cohort of youths seeking treatment related to mental illness and substance use.

Young carers' perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study.

OBJECTIVES: Despite young carers (YCs) providing regular and significant care that exceeds what would normally be associated with an adult caregiver, we need to learn more about their experience interacting with the healthcare system. The primary study aims were to (1) describe YC experiences in interacting with the healthcare system and (2) identify types of support YC recognise as potentially helpful to their caring role. DESIGN AND SETTING: A mixed-methods qualitative study was conducted between March 2022 and August 2022, comprising two phases of (1) semi-structured interviews and focus groups with YCs living in the community to confirm and expand earlier research findings, and (2) a co-design workshop informed by a generative research approach. We used findings from the interviews and focus groups to inform the brainstorming process for identifying potential solutions. RESULTS: Eight YCs completed either a focus group or an interview, and four continued the study and participated in the co-design activity with 12 participants. Phase 1 resulted in three overarching themes: (1) navigating the YC role within the healthcare system; (2) being kept out of the loop; and (3) normalising the transition into caregiving. Phase 2 identified two categories: (1) YC-focused supports and (2) raising awareness and building capacity in the healthcare system. CONCLUSION: Study findings revealed the critical role that YCs play when supporting their families during pivotal interactions in the healthcare system. Like their older caregiver counterparts, YCs struggle to navigate, coordinate and advocate for their family members while juggling their needs as they transition from adolescence to adulthood. This study provides important preliminary insights into YCs encountering professionals, which can be used to design and implement national support structures.