A retrospective cohort study of prescription drug use among youth with intellectual/developmental disabilities in British Columbia.

BACKGROUND: People with intellectual/developmental disabilities (IDD) are known to have high rates of prescription drug use, particularly for psychotropic medications. This is of concern due to the many side effects associated with these medications and because of the risks of polypharmacy. In this paper we compare the most commonly dispensed drugs and all psychotropic medications for youth with IDD compared with youth without IDD. METHODS: Using population-level administrative health data over a 10-year period, this study examined medications dispensed to youth with an IDD aged 15-24 years compared with youth without an IDD. The most common medications dispensed and the number of youth they were dispensed to were determined. As well a wide variety of psychotropic medications were examined. RESULTS: There were a total of 20 591 youth with IDD and 1 293 791 youth without IDD identified. Youth with IDD had higher odds of being dispensed pain medications, amoxicillin, salbutamol, levothyroxine and all the psychotropic medications (antidepressants, antipsychotics, anxiolytics, anti-adrenergic agents, mood stabilisers and stimulants). For youth with IDD, 6558 (31.85%) were dispensed two or more different psychotropic medications within a year, compared with 75 963 (5.87%) of youth without IDD. DISCUSSION: Compared to youth without IDD, youth with IDD had significantly higher odds of being dispensed most of the prescription medications studied, including all of the psychotropic medications. They were also twice as likely to be dispensed two or more medications from different classes of psychotropic drugs within the same year. These findings have important implications for the health of people with IDD and for their health care providers.

Development and initial psychometric properties of the Warwick-Edinburgh Mental Wellbeing Scale-Intellectual Disability version.

BACKGROUND: The Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS; Tennant et al., 2007) is yet to be validated in the intellectual disability (ID) population. The aim of this study was to report the development process and assess the psychometric properties of a newly adapted version of the WEMWBS and the Short WEMWBS for individuals with mild to moderate IDs (WEMWBS-ID/SWEMWBS-ID). METHOD: The WEMWBS item wordings and response options were revised by clinicians and researchers expert in the field of ID, and a visual aid was added to the scale. The adapted version was reviewed by 10 individuals with IDs. The measure was administered by researchers online using screenshare, to individuals aged 16+ years with mild to moderate IDs. Data from three UK samples were collated to evaluate the WEMWBS-ID (n = 96). A subsample (n = 22) completed the measure again 1 to 2 weeks later to assess test-retest reliability, and 95 participants additionally completed an adapted version of the adapted Rosenberg Self-Esteem Scale to examine convergent validity. Additional data from a Canadian sample (n = 27) were used to evaluate the SWEMWBS-ID (n = 123). RESULTS: The WEMWBS-ID demonstrated good internal consistency (ω = 0.77-0.87), excellent test-retest reliability [intraclass correlation coefficient (ICC) = .88] and good convergent validity with the self-esteem scale (r = .48-.60) across samples. A confirmatory factor analysis for a single factor model demonstrated an adequate fit. The SWEMWBS-ID showed poor to good internal consistency (ω = 0.36-0.74), moderate test-retest reliability (ICC = .67) and good convergent validity (r = .48-.60) across samples, and a confirmatory factor analysis indicated good model fit for a single factor structure. CONCLUSIONS: The WEMWBS-ID and short version demonstrated promising psychometric properties, when administered virtually by a researcher. Further exploration of the scales with larger, representative samples is warranted.

Mental health and COVID-19: The impact of a virtual course for family caregivers of adults with intellectual and developmental disabilities.

BACKGROUND: The COVID-19 pandemic has significantly impacted family caregivers of adults with intellectual and developmental disabilities (IDD). This study evaluated a virtual course for family caregivers from across Canada, focused on supporting the mental health and well-being of adults with IDD and their families. The evaluation examined the feasibility and acceptability of the course, as well as the impact of the intervention on participants' overall health and well-being. METHODS: The 6-week virtual course, informed by a parallel Extension for Community Healthcare Outcomes (ECHO) course for service providers, combined didactic instruction with applied activities. A total of 126 family caregiver course participants consented to be part of the research evaluation delivered over three cycles between October 2020 and April 2021. Attendance was measured at each weekly session. Satisfaction was assessed weekly and post-program. Learning, self-efficacy, and well-being were assessed pre- and post-course, and again at follow-up (8 weeks post-course). Mixed-effects models assessed changes between and within individuals across time. RESULTS: Participants had consistent attendance, low-dropout rates, and reported high satisfaction, with 93% of participants reporting that their expectations for the course were met. Compared with pre-course, participants reported improved self-efficacy and well-being post-course, which were maintained at follow-up. CONCLUSIONS: An interactive and applied virtual education course delivered to a large group of family caregivers of adults with IDD was both feasible and acceptable. It positively impacted participants' well-being by offering much needed mental health support and creating a peer-led community of practice.

Changes in community and hospital-based health care use during the COVID-19 pandemic for adults with and without intellectual and developmental disabilities.

BACKGROUND: Due to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery during the COVID-19 pandemic may impact people with IDD differently than others. For community and hospital-based services, this study describes the proportion of adults with and without IDD who used health care in the year pre-COVID-19 and the first year of the pandemic. METHODS: This retrospective cohort study used linked health administrative databases to identify adults aged 18-105 years with and without IDD using unique encoded identifiers. Counts and proportions of adults who used health care services were reported for the pre-COVID-19 year (16 March 2019 to 14 March 2020) and the first COVID-19 year (15 March 2020 to 15 March 2021). RESULTS: Across services, the proportion of adults who used services was lower during the first COVID-19 year compared with the year prior, except for virtual physician visits that increased markedly for people with and without IDD. While the proportion of adults who used services was higher for those with IDD compared with those without IDD for both years, differences were greatest for mental health emergency visits and hospitalisations; adults with IDD were 6.3 to 10.9 times more likely to use these services than others with no IDD during the pandemic. CONCLUSIONS: During the first COVID-19 year in Ontario, Canada, service use decreased for all service types, except for virtual physician visits. In both years, adults with IDD remained more likely to use services than other adults, with the largest differences in use of mental health hospitalisations and mental health emergency department visits.

Beliefs regarding COVID-19 vaccines among Canadian workers in the intellectual disability sector prior to vaccine implementation.

BACKGROUND: Workers supporting adults with intellectual disabilities (ID) experience significant stress in their essential role during COVID-19 due to the high risk of their clients contracting COVID-19 and having adverse outcomes. The purpose of the current study was to describe the attitudes of workers towards COVID-19 vaccination prior to vaccination rollout, with a view to informing strategies to promote vaccine uptake within this high-risk sector. METHODS: An online survey was sent via email to workers supporting adults with ID in Ontario, Canada, between January 21 and February 3, 2021 by agency leadership and union representatives. RESULTS: Three thousand and three hundred and seventy-one workers, representing approximately 11.2% of Ontario workers supporting adults with ID completed an online survey. Most reported that they were very likely (62%) or likely (20%) to get a COVID-19 vaccine (vaccination intent) although 18% reported they were less likely to do so (vaccination nonintent). Workers with vaccination nonintent were younger and were more likely to endorse the beliefs that (1) it will not benefit them or those around them, (2) it was not part of their job, (3) rapid development confers uncertainties and risks, and (4) they were scared of potential vaccine side effects. CONCLUSIONS: There is need to address common misconceptions among workers supporting adults with ID to help activate them as vaccine advocates in the communities they serve. Partnered efforts between workers, unions and agency leadership with public health experts to address concerns are required.

"The doctor will see you now": Direct support professionals' perspectives on supporting adults with intellectual and developmental disabilities accessing health care during COVID-19.

BACKGROUND: It is critical to consider how rapid changes in health care delivery and the rise in use of virtual modalities have impacted adults with intellectual and developmental disabilities and caregivers. OBJECTIVE: The purpose of this paper is to describe direct support professionals' experiences assisting adults with intellectual and developmental disabilities in accessing virtual and in-person health care during COVID-19. METHODS: A content analysis was conducted on responses obtained from an online questionnaire distributed to 942 direct support professionals in Canada. Descriptive statistics were used to report the type of visits that occurred and open text responses describing these visits were coded. RESULTS: Twenty four percent of direct support professionals reported supporting someone at an in-person medical appointment, 22% reported attending at least one video-based virtual appointment and 58% reported supporting at least one phone based virtual appointment in the first 5 months of the pandemic. They identified several barriers and facilitators with each type of visit which suggests there is no "single way" to provide health care to this group, but that optimal care depends on maximizing the fit between the person's abilities, the skill set of direct support professionals and health care providers, and the presenting health care issue. CONCLUSIONS: Study findings provide insight into the experience of health care for this population during COVID-19 and can be used to support direct support professionals and adults with intellectual and developmental disabilities to adapt to safe, supportive and comprehensive virtual and in-person health care during the pandemic and beyond.

Group Virtual Mindfulness-Based Intervention for Parents of Autistic Adolescents and Adults.

Mindfulness-based approaches have been shown to be effective in improving the mental health of parents of youth and adults with autism and other developmental disabilities, but prior work suggests that geography and caregiving demands can make in-person attendance challenging. The purpose of this study was to evaluate the feasibility, acceptability and preliminary outcomes of a mindfulness-based group intervention delivered to parents virtually. It was feasible to deliver this manualized intervention. Twenty-one of 39 parents completed the intervention and completers reported high satisfaction ratings. Parents reported reduced levels of distress, maintained at 3-month follow-up, and increased mindfulness. Changes reported following intervention were similar to changes reported in a prior study of parents competing an in person mindfulness group.

Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. METHODS: The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. RESULTS: The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. CONCLUSIONS: Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.

Individual and contextual predictors of retention in Special Olympics for youth with intellectual disability: who stays involved?

BACKGROUND: Despite the recognised benefits of sport, participation is often reported to be low for youth with intellectual disability (ID). The current study was the first to longitudinally examine sport retention in this population, a critical aspect of ensuring participation. METHODS: Study participants were parents/caregivers of athletes with ID involved in community Special Olympics (SO), 11-22 years of age (N = 345). Participants completed an online survey in 2012 that included caregiver demographic and athlete intrapersonal, interpersonal and broader contextual variables. Retention rates for 2019 were determined using the SO provincial registration lists. RESULTS: Of the 345 survey participants, 81.7% remained active athletes in 2019. Caregiver demographic and athlete intrapersonal factors were largely unrelated to retention. In contrast, retention was associated with the frequency and number of sports athletes participated in, the perceived psychosocial gains of SO involvement and the environmental supports that were available to facilitate participation; frequency of sport participation was the strongest predictor of remaining a registered athlete. CONCLUSIONS: This study has implications for future initiatives aimed at increasing sport retention in a population that struggles to be engaged in sport. Efforts should focus on the athlete experience and sport-specific factors. Coaches and caregivers can foster positive experiences and play an important role in continued sport participation.

High health care costs among adults with intellectual and developmental disabilities: a population-based study.

OBJECTIVE: While it is generally accepted that adults with intellectual and developmental disabilities (IDDs) use health services to a greater extent than the general population, there is remarkably little research that focuses on the costs associated with their health care. Using population-based data from adults with IDD in Ontario, this study aimed to estimate overall health care costs, classify individuals into high and non-high cost categories and describe differences in the demographics, clinical profiles and health care use patterns between these groups. DESIGN: A retrospective cohort study based in Ontario, Canada, was conducted with the use of linked administrative health data. METHODS: A costing algorithm developed for the general population in Ontario was applied to estimate health care costs of adults with IDD under age 65 for 2009 and 2010. Individuals were categorised into two groups according to whether their total annual health care costs were among the highest decile in the general population. These groups were compared on demographic and clinical variables, and relative mean costs for six types of health care services in the two groups were computed. In addition, we computed the proportion of individuals who remained in the high cost group over 2 years. RESULTS: Among adults with IDD, 36% had annual health care expenditures greater than $2610 CAD (top decile of all Ontario adults under 65). These individuals were more likely to be female, to be in the oldest age groups, to live in group homes and to be receiving disability income support than individuals whose expenditures were below the high cost threshold. In addition, they had higher rates of all the physical and mental health conditions studied. Greatest health care expenses were due to hospitalisations, especially psychiatric hospitalisations, continuing care/rehabilitation costs and medication costs. The majority of individuals whose health care costs placed them in the high cost category in 2009 remained in that category a year later. DISCUSSION: Adults with IDD are nearly 4 times as likely to incur high annual health care costs than those without IDD. Individuals with IDD and high health care costs have unique health and demographic profiles compared with adults with IDD whose annual health care costs are below the high cost threshold. Attending to their health care needs earlier in their health care trajectory may be an opportunity to improve health and reduce overall health care costs. It is important that we explore how to best meet their needs. Models proposed to meet the needs of adults with high health care costs in the general population may not apply to this unique group.

How HIV affects health and service use for adults with intellectual and developmental disabilities.

OBJECTIVE(S): Although rates of human immunodeficiency virus (HIV) are similar for individuals with and without intellectual and developmental disabilities (IDD), very little is known about the health needs and service use of those with IDD and HIV. Among a population with IDD, we compared the physical and mental health profiles, as well as general and mental health service use for those with and without HIV. DESIGN: Retrospective cohort study in Ontario, Canada using linked administrative health and social service databases. METHODS: The prevalence of physical conditions and mental health disorders, and patterns of service use for any reason and service use for mental health issues were compared among Ontario adults with IDD and HIV (n = 107) and without HIV (n = 63 901) in log-binomial models adjusted for age, sex and neighbourhood income and rurality. RESULTS: Adults with IDD and HIV were more likely than those without HIV to have three types of mental health disorders: non-psychotic disorders [aRR: adjusted rate ratio (aRR): 1.22 (95% confidence interval (CI): 1.01-1.47)], psychotic disorders [aRR: 1.57 (1.09, 2.28)] and substance use disorders [aRR: 3.52 (2.53, 4.91)]. Adults with IDD and HIV were also more likely to have emergency department visits [aRR: 1.68 (1.42, 1.98)] and hospital admissions [aRR: 2.55 (1.74, 3.73)] for any reason, and to have mental health emergency department visits and/or admissions [aRR: 2.82 (1.90, 4.18)]. DISCUSSION: Adults with IDD and HIV have complex health profiles and greater health service use than HIV-negative adults with IDD. These findings call for closer integration of programs delivered by the HIV and disability sectors to optimise the health of this patient population.

Maternal and offspring outcomes in women with intellectual and developmental disabilities: a population-based cohort study.

OBJECTIVE: To compare the risks for adverse maternal and offspring outcomes in women with and without intellectual and developmental disabilities. DESIGN: Population-based cohort study. SETTING: Ontario, Canada. POPULATION: Singleton obstetrical deliveries to 18- to 49-year-old women with and without intellectual and developmental disabilities (n = 3932 in the exposed cohort, n = 382 774 in the unexposed cohort; 2002-2011 fiscal years). METHODS: Women with intellectual and developmental disabilities were identified based on diagnoses in health administrative data or receipt of disability income support. The unexposed cohort comprised women without intellectual and developmental disabilities. Modified Poisson regression was used to compute adjusted relative risks (aRR) and 95% confidence intervals (CI) comparing the two cohorts. MAIN OUTCOME MEASURES: Primary maternal outcomes were: gestational diabetes, gestational hypertension, pre-eclampsia, eclampsia, and venous thromboembolism. Primary offspring outcomes were: preterm birth, small for gestational age, and large for gestational age. RESULTS: The exposed cohort, compared with the unexposed cohort, had increased risks for pre-eclampsia (aRR 1.47, 95% CI 1.11-1.93) and venous thromboembolism (aRR 1.60, 95% CI 1.17-2.19). Their offspring had increased risks for preterm birth (aRR 1.63, 95% CI 1.47-1.80) and small for gestational age (aRR 1.35, 95% CI 1.25-1.45). CONCLUSIONS: These findings suggest that there is a need to address modifiable risk factors for adverse outcomes among women with intellectual and developmental disabilities prior to and during pregnancy. Moreover, there is a need to enhance monitoring for maternal and offspring complications in this population. TWEETABLE ABSTRACT: Large cohort study: intellectual and developmental disabilities predispose women/babies to adverse outcomes.

Needs among persons with human immunodeficiency virus and intellectual and developmental disabilities in community mental health care: a cross-sectional study.

BACKGROUND: The experience of having human immunodeficiency virus (HIV) is often associated with co-occurring mental health issues. Community mental health services are an important source of support for persons with HIV living in the community. Persons with intellectual disability (ID) are vulnerable to HIV and may have unique support needs beyond those without ID receiving community care. This study compared support needs of men with HIV in community mental health programmes, with and without ID. METHODS: The sample was composed of 138 HIV-positive men with and without ID receiving mental health case management from one community organisation in Ontario, Canada, on 31 March 2013. Staff-rated needs across 16 domains grouped into four clusters were measured using the Camberwell Assessment of Need: Basic needs (accommodation, food, public transportation, money and benefits); self-care/functional needs (looking after the home, self-care and daytime activities); health/safety needs (physical health, psychological distress, psychotic symptoms, safety to self and safety to others); and social needs (company, intimate relationships and sexual expression). Adjusted logistic regression models examined the association between ID and each need domain. RESULTS: One-quarter of the sample (n = 34/138, 24.6%) had co-occurring ID. Those with ID were more likely to have needs in the basic cluster [odds ratios: food 4.05 (1.14, 14.44), P:0.031; benefits 2.58 (1.05, 6.32), P:0.038)] and self-care/functional cluster [looking after the home (2.75 (1.17, 6.49), P:0.021); self-care (2.72 (1.18, 6.27), P:0.019)], but were less likely to have need for sexual expression: 0.35 (0.14,0.90), P:0.030) (social cluster). There were no differences in the domains in the health/safety cluster. CONCLUSION: Despite elevated cognitive needs in the basic and self-care/functional clusters for the ID group, limited other differences suggest that with moderate additional targeting, community mental health programmes for persons with HIV may be appropriate for men with ID.

Low-trauma fractures and bone mineral density testing in adults with and without intellectual and developmental disabilities: a population study.

Individuals with intellectual and developmental disabilities (IDD) are at risk for low-trauma fractures. We investigated the rate of low-trauma fractures and the odds of BMD testing in adults with/without IDD. Adults with IDD were more likely to have a low-trauma fracture, but there was no difference in bone mineral density (BMD) testing rates. INTRODUCTION: Individuals with IDD are at increased risk for developing osteoporosis which contributes to high rates of low-trauma fracture. Low-trauma fractures can lead to significant pain and further decrease mobility. It is therefore important to effectively manage osteoporosis, for example, by monitoring BMD in persons with IDD. The objective of this study was to examine the rates of low-trauma fracture and BMD testing among a population-based cohort of people with IDD and compare them to those without IDD. METHODS: Using administrative data, we created a cohort of adults with IDD between the ages of 40 and 64. They were compared to a random 20 % sample of those without IDD. The number of low-trauma fractures and BMD tests in each group were determined for Ontario residents between April 1, 2009 and March 31, 2010. RESULTS: Adults with IDD were approximately three times more likely to experience a low-trauma fracture than adults without IDD. The largest disparity in prevalence of low-trauma fractures between those with and without IDD was for men, older adults (60-64 years old) and those living in rural or lower-income neighbourhoods. Post low-trauma fracture, there was no significant difference in the likelihood of receiving a BMD test between individuals with and without IDD. CONCLUSIONS: The findings of this study have a number of important implications related to early detection, prevention and proper management of osteoporosis and low-trauma fractures among persons with IDD.

Individual, social and contextual factors associated with psychiatric care outcomes among patients with intellectual disabilities in the emergency department.

BACKGROUND: Individuals with intellectual disabilities (ID) are disproportionately high users of psychiatric emergency services. Despite the demand for psychiatric assessments in the emergency department (ED), no clear guidelines have been established as to what factors should guide clinical decision-making processes. The current study aimed to explore individual, social and contextual factors related to psychiatric care outcomes among patients with ID in the emergency department. METHOD: Emergency department charts were reviewed for 66 individuals with ID who visited the emergency department during a psychiatric crisis. RESULTS: Standardised crisis severity scores were significantly higher in patients seen by psychiatrists as compared with patients who did not receive psychiatric consultations in the emergency department. A significantly greater proportion of patients with moderate or severe levels of ID (vs. borderline/mild) received psychiatric consultations. Emergency department visits resulting in inpatient hospital admission did not differ from those that did not, with the exception of the level of ID: patients admitted to psychiatric inpatient care were more likely to have moderate or severe levels of ID. CONCLUSIONS: The psychiatric care experiences of patients with ID in the emergency department appear highly variable. Further research focused on emergency department clinical decision-making practices concerning this population is warranted.

Disparities in diabetes prevalence and preventable hospitalizations in people with intellectual and developmental disability: a population-based study.

AIMS: To describe and compare population-level aspects of diabetes and diabetes primary care among people with and without intellectual and developmental disabilities. METHODS: Administrative health data accessed from the Institute for Clinical Evaluative Sciences was used to identify a cohort of Ontarians with and without intellectual and developmental disabilities between the ages of 30 and 69 years (n = 28 567). These people were compared with a random sample of people without intellectual and developmental disabilities (n = 2 261 919) according to diabetes prevalence, incidence, age, sex, rurality, neighbourhood income and morbidity. To measure diabetes primary care, we also studied hospitalizations for diabetes-related ambulatory care-sensitive conditions. RESULTS: Adults with intellectual and developmental disabilities had a consistently higher prevalence and incidence of diabetes than those without intellectual and developmental disabilities. Disparities in prevalence between those with and without intellectual and developmental disabilities were most notable among women, younger adults and those residing in rural or high income neighbourhoods. In terms of hospitalizations for diabetes-related ambulatory care-sensitive conditions, people with intellectual and developmental disabilities were 2.6 times more likely to be hospitalized. CONCLUSIONS: Adults with intellectual and developmental disabilities are at high risk of developing and being hospitalized for diabetes. The findings of the present study have a number of important implications related to the early detection, prevention and proper management of diabetes among adults with intellectual and developmental disabilities.

The uptake of secondary prevention by adults with intellectual and developmental disabilities.

BACKGROUND: Secondary prevention involves the early detection of disease while it is asymptomatic to prevent its progression. For adults with intellectual and developmental disabilities, secondary prevention is critical as they may not have the ability to recognize the early signs and symptoms of disease or lack accessible information about these. METHODS: Linked administrative health and social service data were used to document uptake related to four secondary prevention guidelines among adults with intellectual and developmental disabilities. Rates were compared to those from a general population sample representing the same age ranges. RESULTS: Of 22% of adults with intellectual and developmental disabilities had a periodic health examination in a two-year period (compared to 26.4% of adults without intellectual and developmental disabilities). Adults with intellectual and developmental disabilities were less likely to undergo recommended age and gender-specific screening for the three types of cancer studied (colorectal, breast and cervical). CONCLUSIONS: Adults with intellectual and developmental disabilities in Ontario experience disparities in secondary prevention. As changes to primary care delivery and secondary prevention recommendations in the province and elsewhere continue to evolve, close monitoring of the impacts on adults with intellectual and developmental disabilities combined with dedicated efforts to increase access is warranted.

Are cervical and breast cancer screening programmes equitable? The case of women with intellectual and developmental disabilities.

BACKGROUND: Effective cancer screening must be available for all eligible individuals without discrimination. Lower rates of cervical and breast cancer screening have been reported in certain groups compared with women from the general population, such as women with intellectual and developmental disabilities (IDD). Research on the factors explaining those observed differences is crucial to determine whether practices are unfair and could be improved. The aim of this population-based study was to describe cancer screening utilisation by women with IDD in Ontario, Canada compared with other women in Ontario. The specific objectives were (1) to estimate the rates of cervical and breast cancer screening among eligible women with IDD in Ontario; (2) to compare the rates of cervical and breast cancer screening between eligible women with and without IDD; and (3) to examine if any observed differences between women with and without IDD persist after factors such as age, socio-economic status, rurality and healthcare utilisation are accounted for. METHOD: This study draws women with IDD from an entire population, and draws a randomly selected comparison group from the same population. It controls for important confounders in cancer screening within the limitations of the data sources. The study was conducted using health administrative databases and registries in Ontario, Canada. Two cohorts were created: a cohort of all women identified as having an IDD and a cohort consisting of a random sample of 20% of the women without IDD. RESULTS: The proportion of women with IDD who are not screened for cervical cancer is nearly twice what it is in the women without IDD, and 1.5 times what it is for mammography. CONCLUSIONS: Findings suggest that women with IDD experience inequities in their access to cancer screening. Public health interventions targeting this population should be implemented.

Using administrative health data to identify individuals with intellectual and developmental disabilities: a comparison of algorithms.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) experience high rates of physical and mental health problems; yet their health care is often inadequate. Information about their characteristics and health services needs is critical for planning efficient and equitable services. A logical source of such information is administrative health data; however, it can be difficult to identify cases with IDD in these data. The purpose of this study is to evaluate three algorithms for case finding of IDD in health administrative data. METHODS: The three algorithms were created following existing approaches in the literature which ranged between maximising sensitivity versus balancing sensitivity and specificity. The broad algorithm required only one IDD service contact across all available data and time periods, the intermediate algorithm added the restriction of a minimum of two physician visits while the narrow algorithm added a further restriction that the time period be limited to 2006 onward. The resulting three cohorts were compared according to socio-demographic and clinical characteristics. Comparisons on different subgroups for a hypothetical population of 50,000 individuals with IDD were also carried out: this information may be relevant for planning specialised treatment or support programmes. RESULTS: The prevalence rates of IDD per 100 were 0.80, 0.52 and 0.18 for the broad, intermediate and narrow algorithms, respectively. Except for 'percentage with psychiatric co-morbidity', the three cohorts had similar characteristics (standardised differences < 0.1). More stringent thresholds increased the percentage of psychiatric co-morbidity and decreased the percentages of women and urban residents in the identified cohorts (standardised differences = 0.12 to 0.46). More concretely, using the narrow algorithm to indirectly estimate the number of individuals with IDD, a practice not uncommon in planning and policy development, classified nearly 7000 more individuals with psychiatric co-morbidities than using the intermediate algorithm. CONCLUSIONS: The prevalence rate produced by the intermediate algorithm most closely approximated the reported literature rate suggesting the value of imposing a two-physician visit minimum but not restricting the time period covered. While the statistical differences among the algorithms were generally minor, differences in the numbers of individuals in specific population subgroups may be important particularly if they have specific service needs. Health administrative data can be useful for broad-based service planning for individuals with IDD and for population level comparisons around their access and quality of care.

Exposure to client aggression and burnout among community staff who support adults with intellectual disabilities in Ontario, Canada.

BACKGROUND: Studies have shown that staff who support adults with intellectual disabilities (ID) are exposed to challenging behaviour in their work including client aggression. Exposure to aggressive behaviour has been associated with staff stress and burnout. Study samples have been small however, and there has been very little data exploring this issue among North American staff. METHODS: A cross-sectional survey which included demographics, measures of frequency and severity (including perceived severity and a standardised severity score) of exposure to client aggression and the Maslach Burnout Inventory - Human Services Survey (MBI-HSS) was completed by 926 community staff who support adults with ID in Ontario, Canada. Relationships between demographic variables and exposure to aggression were examined with descriptive statistics. Pearson correlations were used to analyse exposure variables and MBI-HSS scores. RESULTS: Nearly all staff reported being exposed to client aggression in the prior 6 months. Mean MBI-HSS scores were comparable to previously published data in similar populations with the exception of a higher score in the personal accomplishment domain. All measures of exposure to aggression were significantly positively correlated with MBI-HSS scores in the emotional exhaustion and depersonalisation dimensions of burnout. CONCLUSIONS: The prevalence of burnout in this North American sample is comparable to what has been reported in similar populations in other locations, although these staff may have a higher sense of accomplishment with regard to their work. Findings from this large sample support the evidence that exposure to client aggression affects staff emotional well-being but is by no means the only important factor. Further study is needed to explore the differences and similarities reported here as well as other contributing factors which will guide the implementation of effective strategies to improve staff well-being.