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.

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.

Asthma prevalence and control levels among Special Olympics athletes, and asthma-related knowledge of their coaches.

BACKGROUND: The prevalence of asthma among athletes with intellectual disabilities, and the asthma knowledge levels of their coaches, is unknown. METHODS: Special Olympics Canada athletes completed a demographic questionnaire (n = 208). Athletes who identified as having ever or current asthma completed the Asthma Control Questionnaire and the Mini Asthma Quality of Life Questionnaire and were measured for height, weight and lung function (n = 73). National level coaches (n = 27) completed a questionnaire pertaining to asthma knowledge. RESULTS: The prevalence of ever and current asthma were 35.5% (n = 73) and 21.1% (n = 44), respectively. Athletes with asthma reported that they had inadequately controlled asthma, but good quality of life. Coaches correctly answered 43% true/false questions on the survey, indicating suboptimal asthma knowledge. CONCLUSIONS: Athletes with intellectual disabilities appear to have a greater prevalence of asthma than the general population; however, coaches of these athletes appear to have limited knowledge pertaining to asthma and exercise-induced asthma.

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.

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.

Factors associated with hospitalisations for ambulatory care-sensitive conditions among persons with an intellectual disability: a publicly insured population perspective.

BACKGROUND: Hospitalisations for ambulatory care-sensitive (ACS) conditions are used as an indicator of access to, and the quality of, primary care. The objective was to identify factors associated with hospitalisations for ACS conditions among adults with an intellectual disability (ID) in the context of a publicly insured healthcare system. METHODS: This study examined adults with an ID living in a Canadian province between 1999 and 2003 identified from administrative databases. Using 5 years of data for the study population, characteristics of persons hospitalised or not hospitalised for ACS conditions were compared. Using a conceptual model, independent variables were selected and an analysis performed to identify which were associated with hospitalisations for ACS conditions. The correlated nature of the observations was accounted for statistically. RESULTS: Living in a rural area [odds ratio (OR) 1.3; 95% confidence intervals (CI) = 1.0, 1.8], living in an area with a high proportion of First Nations people (OR 2.3; 95% CI = 1.3, 4.1), and experiencing higher levels of comorbidity (OR 25.2; 95% CI = 11.9, 53.0) were all associated with a higher likelihood of being hospitalised for an ACS condition. Residing in higher income areas had a protective effect (OR 0.56; 95% CI = 0.37, 0.85). None of the health service resource variables showed statistically significant associations. CONCLUSIONS: Persons with an ID experience inequity in hospitalisations for ACS conditions according to rurality, income and proportion who are First Nations in a geographic area. This suggests that addressing the socio-economic problems of poorer areas and specifically areas densely populated by First Nations people may have an impact on the number of hospitalisations for ACS conditions. Study strengths and limitations and areas for potential future research are discussed.

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.

Hospitalisation rates for ambulatory care sensitive conditions for persons with and without an intellectual disability--a population perspective.

BACKGROUND: There is evidence that persons with an intellectual disability (ID) face barriers to primary care; however, this has not been extensively studied at the population level. Rates of hospitalisation for ambulatory care sensitive conditions are used as an indicator of access to, and quality of, primary care. The objective of the study was to compare hospitalisation rates for ambulatory care sensitive conditions between persons with and without an ID in a publicly insured population. METHODS: Persons with an ID were identified among the general population of a Canadian province between 1999 and 2003. Using a list of conditions applicable to persons with an ID, rates of hospitalisations for ambulatory care sensitive conditions for persons with and without an ID were calculated and compared. Regression models were used to adjust for age, sex and place of residence. Hospitalisation rates for specific conditions were also compared, controlling for differences in disease prevalence where possible. RESULTS: Persons with an ID were consistently hospitalised for ambulatory care sensitive conditions at a higher rate than persons without an ID. Between 1999 and 2003 the adjusted rate ratio (RR) was 6.1 [95% confidence interval (CI) = 5.6, 6.7]. Rate ratios were highest when comparing persons with, to persons without, an ID between the ages of 30-39 (RR = 13.1; 95% CI = 10.6, 16.2) and among urban area dwellers (RR = 7.0; 95% CI = 6.2, 7.9). Hospitalisation rates for epilepsy and schizophrenic disorders were, respectively, 54 and 15 times higher for persons with compared with persons without an ID. Rate ratios for diabetes and asthma remained significant after controlling for the population prevalence of these diseases. CONCLUSIONS: The large discrepancy in rates of hospitalisation between persons with and without an ID is an indicator of inadequate primary care for this vulnerable population. Decreasing the number of ambulatory care sensitive condition hospitalisations through specialised outpatient programmes for persons with an ID would potentially lead to better health, improved quality of life and cost savings. Future research should include potentially important factors such as disease severity, socio-economic variables and measures of health service organisation in the analysis. International comparisons of ambulatory care sensitive condition hospitalisation rates could point to the benefits and limitations of the health service policy directions adopted by different countries.

Completing the audit cycle: the outcomes of audits in mental health services.

AIMS: To assess how far those UK National Health Service mental health settings that tested, and prior to publication, used the Newcastle Clinical Audit Toolkit for Mental Health (NCAT) completed the audit cycle. DATA SOURCES: Twelve clinical audit project reports, each focused on one of the five modules in the NCAT, from four rounds of activity over a 2-year period; clinical and managerial staff in the settings where audit projects had taken place. DATA EXTRACTION: Interviews with audit project team members about the recommendations of the 12 audit project reports and about contextual issues; all projects had reported at least 2 years previously. RESULTS OF DATA SYNTHESIS: In analysing the audit project outcomes, five categories of inaction were discernible and five further categories were needed to describe varying states of progress. It was necessary to discriminate between actions attributed to the NCAT audit projects and actions attributed mainly to other initiatives. In total, 26.4% of audit recommendations were still under discussion or in progress. A relatively low proportion of recommendations from audit report findings (34.7%) had been implemented, and these were divided almost equally between recommendations attributed to the NCAT projects (38) and those attributed to other initiatives in the organization (37). CONCLUSION: Investigation of the medium-term outcomes of clinical audit projects has provided an insight into what might usefully be termed the process of completing the audit cycle. The time-scales required to reach the point at which action is deemed to have been implemented or not may be as long as 3 years. Conceptualizing the action stage of the cycle as a single discrete event fails to do justice to the complexity of the process, and attributing the implementation of change in clinical settings to single causes such as individual audit projects is problematic.

Sexual abuse in children and adolescents with intellectual disability.

The present authors conducted a study of the occurrence of victimization and the perpetration of sexual abuse among 43 in-patients with intellectual disability aged between 9 and 21 years who were admitted to a child and adolescent psychiatric in-patient department over a period of 5 years. A retrospective case-note review was employed that explored the nature and severity of abuse in relation to the age, gender and level of disability. The prevalence of abuse or abusive behaviour, i.e. 14% of 300 admissions, did not change over time. In 13 out of the 43 cases, the issue of sexual abuse was identified after admission. Victimization alone occurred in 21 cases, perpetration alone in six cases, and both victimization and perpetration in 16 cases. Fifty per cent of the victims had been abused by a member of their close or extended family. Most cases (62%) were adolescents. There was only one instance of a victim being abused by a female. However, there were five girls who were perpetrators, all of whom had previously been victims. By contrast, 11 out of the 17 male perpetrators had been victims. Despite difficulties of disclosure, it was possible to establish that severely disabled patients had suffered sexual abuse. The present data support theories which (1) recognize gender differences in sexual abuse patterns and (2) have a developmental perspective, incorporating the influence of adolescence.

Psychopathology of sexual abuse in young people with intellectual disability.

The present study addressed two issues using a sample of child and adolescent victims and perpetrators of sexual abuse: (1) the extent of post-traumatic stress disorder (PTSD) in the sample; and (2) the possible distinction between perpetrators whose motivations were sexually impulsive, and those who were controlling and abuse-reactive. Retrospective case material from 43 cases (21 victims only, and 22 perpetrators, of whom 16 were also victims) provided the data. Post-traumatic symptomatology was not common. Only one case of PTSD was found. Perpetrators could be distinguished by whether they had suffered sexual abuse alone, sexual and physical abuse, or neither. The proposed distinction between perpetrators received support. Sexual abuse directed at younger victims was associated with earlier experience of multiple forms of abuse. The present data does not support the view that post-traumatic symptoms following victimization are a mediator of sexual abuse perpetration. It is argued that an elaboration of the Williams & New developmental model of perpetration better fits the data.

A comparative analysis of six audit systems for mental health nursing.

PURPOSE: To devise an analytical framework to help identify strengths and weaknesses in the audit process as specified by existing psychiatric nursing audit systems, in order to analyse current audit practice and identify improvements for incorporation in the Newcastle Clinical Audit Toolkit for Mental Health. DATA SOURCES: Published material relating to the following six systems: the Central Nottinghamshire Psychiatric Nursing Audit; Psychiatric Nursing Monitor; Standards of Care and Practice; Achievable Standards of Care; Quartz; and Quest. DATA EXTRACTION: Comparison of the six systems according to an analytical framework derived from detailed empirical study (structures, processes and outcomes) of one of them in use and the educational evaluation literature. Examination of the extent to which guidance is provided for operating the systems and for wider process-related aspects of audit. RESULTS OF DATA SYNTHESIS: Five of the systems failed to specify some important elements of the audit process. Conceptually, the six systems can be divided into two main types: 'instrument-like' systems designed along psychometric lines and which emphasize the distance between the subjects of audit and the operators of the systems, and 'tool-like' systems which exploit opportunities for care setting staff to engage in the audit process. A third type of system is the locally-developed system which is offered to a wider audience but which does not make the same level of claim to universal applicability. CONCLUSION: The analytical framework allows different approaches to audit to be compared and contrasted not only according to the techniques used, but also according to process issues. The analysis of six systems revealed a variety of different techniques and procedures which can facilitate, in a methodologically rigorous manner, practitioner and other stakeholder involvement in audit processes.

Exploring the links between audit and the research process.

The policy background The last decade has witnessed an explosion of activity among health professionals under the banner of audit and quality. Prior to the publication of Working for Patients ( 1 ) such activities were entirely optional, but the NHS Review ( 1 ) introduced a requirement to develop them. Since then the DoH has funded separate programmes of audit for the medical professions on the one hand, and the nursing and therapy professions on the other. Funds totalling more than £220 million ( 2 ) were distributed via two channels - through the regional health authorities for local bidding mainly among provider units, and through a central bidding process for national projects such as those sponsored by the royal colleges. This programme ended in 1995 when audit funds were devolved to health commissions to facilitate audit activities on a more local basis.

Involving clients in clinical audits of mental health services.

Involving clients in service audits is never straightforward. In developing a new audit system for use in mental health settings a review of the literature demonstrated that the concept of satisfaction, like quality, is problematic because it is multidimensional, it is affected by expectations, and may be defined differently by professionals and clients. Furthermore, it fails to address the notion of empowerment. However, the literature provided some clear methodological guidance about involving clients in clinical audit. Clients must be involved in defining audit topics, and the most appropriate techniques of data-collection are open-ended and qualitative. Clients can also be involved in the process of audit, particularly through conducting audits in collaboration with professionals. Evidence from the literature persuaded the authors to abandon the idea of developing an audit module on patient satisfaction, and instead to develop one with a clear focus on clients' perspectives, entitled "Clients' Appraisal of Care" as part of the Newcastle Audit System, with clients involved throughout.

Effect of age on prehospital cardiac resuscitation outcome.

To compare resuscitation outcomes in elderly and younger prehospital cardiac arrest victims, we used a retrospective case series over 5 years in rural advanced life support (ALS) units and a University hospital base station. Participants included 563 adult field resuscitations. Excluded were patients with noncardiac etiologies, those less than 30 years old, and those with unknown initial rhythms. Patients were grouped by age. Return of spontaneous circulation (ROSC) and survival to hospital discharge were compared by Yates' chi-square test. ALS treatment of cardiac arrest was by regional protocols and on-line physician direction. Sixty percent (320/532) of patients were over 65 years old. The proportion with initial rhythm ventricular fibrillation (VF) was 50% in the elderly and 48% in younger patients. ROSC was achieved in 18% of elderly and 16% of younger patients; survival was 4% among the elderly and 5% for younger patients. The oldest survivor was 87 years old. Most survivors were discharged, in good Cerebral Performance Categories. There was no difference in outcome by age group when initial cardiac rhythm was considered. Early cardiopulmonary resuscitation (CPR) and ALS and initial rhythm VF were associated with the best resuscitation success. Age has less effect on resuscitation success than other well-known factors such as early CPR and ALS. Advanced age alone should probably not deter resuscitation attempts.