Brief report: cervical cancer screening in women with intellectual and developmental disabilities who have had a pregnancy.

BACKGROUND: Women with intellectual and developmental disabilities (IDD) have lower cervical cancer screening rates than women without IDD. Key barriers to screening uptake include physician or caregiver assumptions that screening is unnecessary because women with IDD are not sexually active. Our objective was to compare cervical cancer screening rates in women with and without IDD who had had a pregnancy. METHOD: We conducted a population-based retrospective cohort study using linked Ontario (Canada) health and social services administrative data. We identified 20- to 64-year-old women with (N = 5033) and without (N = 527 437) IDD who had had a pregnancy. We examined the occurrence of cervical cancer screening between April 1, 2007 and March 31, 2010. We compared screening rates in women with and without IDD using logistic regression, controlling for age, region of residence, neighbourhood income quintile and morbidity level. RESULTS: Women with IDD who had had a pregnancy were more likely than those without IDD to be young, to live in the lowest neighbourhood income quintile, to live in rural areas and to have high or very high morbidity. Even after controlling for these factors, women with IDD were less likely than women without IDD to be screened (67.7% vs. 77.0%; adjusted odds ratio 0.61; 95% confidence interval 0.58-0.65). CONCLUSIONS: Even among women who have had a pregnancy and are therefore known to have been sexually active, women with IDD face significant disparities in cervical cancer screening. Strategies to promote equitable uptake of cervical cancer screening for women with IDD need to be implemented.

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.

Using national surveys for mental health surveillance of individuals with intellectual disabilities in Canada.

INTRODUCTION: Individuals with intellectual disabilities have a higher prevalence of health problems, including psychiatric and behavioural conditions, than the general population. However, there is little population-based information in Canada about individuals with a dual diagnosis of psychiatric disorder and intellectual impairment. The aim of this study was to determine whether the 2005 Canadian Community Health Survey (CCHS) and the 2006 Participation and Activity Limitation Survey (PALS) could be used to estimate the prevalence of dual diagnosis in Canada. METHODS: We undertook a secondary analysis of two population-based surveys to determine if these could be used to estimate the prevalence of psychiatric or behavioural conditions among adults with intellectual disabilities in Canada. RESULTS: The surveys reflect prevalence estimates of intellectual disabilities (CCHS: 0.2% and PALS: 0.5%) that are considerably lower than those published in the literature. While it was possible to calculate the proportion of individuals with a dual diagnosis (CCHS: 30.6% and PALS: 44.3%), the surveys were of limited use for detailed analyses. The estimates of prevalence derived from the surveys, especially from the CCHS, were of unacceptable quality due to high sampling variability and selection bias. CONCLUSION: The estimates should be interpreted with caution due to concerns regarding the representativeness of the sample with intellectual disabilities in the national surveys.

Correlates of age at diagnosis of autism spectrum disorders in six Canadian regions.

INTRODUCTION: Early identification of autism spectrum disorders (ASD) is important, since earlier exposure to behavioural intervention programs may result in better outcomes for the child. Moreover, it allows families timely access to other treatments and supports. METHODS: Using generalized linear modeling, we examined the association between child and family characteristics and the age at which 2180 children were diagnosed with ASD between 1997 and 2005 in six Canadian regions. RESULTS: A diagnosis of pervasive developmental disorder-not otherwise specified (PDD-NOS) or Asperger syndrome, rural residence, diagnosis in more recent years, and foreign birthplace were associated with a later age at diagnosis. Children who are visible minorities or who have siblings with ASD were more likely to be diagnosed earlier. Collectively, these factors explained little of the variation in age at diagnosis, however. CONCLUSION: While it is encouraging that ethnocultural identity, neighbourhood income, urban or rural residence, and sex of the child were not major contributors to disparities in the age when children were identified with ASD, more work is needed to determine what does account for the differences observed. Regional variations in the impact of several factors suggest that aggregating data may not be an optimal strategy if the findings are meant to inform policy and clinical practice at the local level.

Injury incidence and patterns in workers with intellectual disability: a comparative study.

BACKGROUND: Workplace safety is a concern in the employment of persons with intellectual disability, due to both real concerns for employee well-being, and the effect that negative perceptions of safety risk can have on hiring. METHOD: This study involved a retrospective analysis of workplace insurance claim records for workers with and without disability in a Canadian social enterprise. RESULTS: Workers with intellectual disability sustained fewer injuries and experienced fewer absences due to injury than workers without disability. Lost-time injury rates for this business were not significantly different from those reported by other employers in the jurisdiction. CONCLUSION: Workplace safety is a concern for all workers, but fear of increased injury rates and heightened compensation costs should not be perceived as a risk when hiring individuals with intellectual disability.

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.

Participation in intellectual disability research: a review of 20 years of studies.

BACKGROUND: Researchers have noted difficulties in attracting adequate numbers of participants with intellectual disabilities (ID) to their studies. METHODS: This study was a review of participation by adults with ID in research conducted in South Eastern Ontario over a 20-year period (1987-2006). Original research studies were identified by local investigators and then reviewed for inclusion and exclusion criteria. The report of each study was then reviewed by three reviewers and key information was extracted. The extent of study participation was calculated using three methods and compared along with key design characteristics. RESULTS: Nine studies met all inclusion/exclusion criteria and provided sufficient data to calculate participation. Among the studies there was a variety of purposes, research designs and recruitment strategies. Using the participant/approached calculation, participation varied between 41.8% and 100%. Higher participation was observed in studies where investigators had direct access to participants, the data collection was non-invasive and consent was required from substitute decision-makers only. There was no clear trend of increasing or decreasing participation over time. CONCLUSIONS: Researchers seeking the participation of adults with ID in their studies must incorporate factors influencing participation into study designs to ensure robust results and effective use of research resources.

Choosing a measure of support need: implications for research and policy.

BACKGROUND: The paradigm surrounding the delivery of care for individuals with intellectual disabilities (ID) is shifting from a deficit-based approach to a support-based approach. However, it is unclear whether measures of support act as a proxy for adaptive functioning. METHODS: A sample of 40 staff or family members of individuals with ID completed the Supports Intensity Scale and the Scales of Independent Behavior-Revised, Short Form. Correlations were used to examine the relationship between these scales. RESULTS: The subscales of the Supports Intensity Scale as well as the overall support needs index were highly correlated with both the Broad Independence W score and the support score (which reflects both maladaptive and adaptive behaviours) of the Scales of Independent Behavior-Revised. CONCLUSIONS: The strong correlations between these two scales confirm previous findings that current measures of support and measures of adaptive behaviour tap into the same underlying construct. These findings have implications for the development, use and interpretation of research and planning tools.

Physical mobility limitations in adults with intellectual disabilities: a systematic review.

BACKGROUND: Mobility limitations increase with age in the general population. Despite a growing population of older adults with intellectual disabilities (ID), mobility is rarely studied in the ID literature. The specific aim of this study was to identify and summarise primary literature investigating mobility limitations in adults with ID. METHODS: This study was a systematic review of the epidemiological literature (incidence and prevalence) of mobility limitations among adults with ID. Four electronic databases were searched from January 1980 to May 2007 for publications according to predefined inclusion/exclusion criteria. Additional sources were consulted. Two reviewers extracted data from each of the included articles. RESULTS: Thirty-two publications representing 31 studies were ultimately included. In general, studies did not focus on mobility but were conducted for other purposes. All studies were conducted in industrialised countries. Only one study used a longitudinal design; the remainders were cross-sectional. Few investigators reported on the representativeness of the sample or the validity of the measurement tool. Study samples differed substantially and investigators used numerous definitions of mobility limiting comparability between studies. CONCLUSIONS: There is a need for increased research on mobility limitations among adults with ID, particularly longitudinal research. Researchers investigating mobility limitations should use validated measurement tools and offer detailed descriptions of the study sample and how it compares with an identifiable population.

Survey of community adjustment of previously institutionalized developmentally disabled persons.

A survey was conducted of the community adjustment of 108 developmentally disabled (mentally retarded) persons who had spent at least three years in an institution in southeastern Ontario. On average, they had resided 3.5 years in the community, were 40 years of age, with a mental age of five years and a median IQ of 41, and most had one or more moderate to severe physical disabilities. During their most recent year living in the community it was found that their daily living skills remained unchanged compared with their skill level in the year prior to community placement. As well, the community staff rated them as average in level of performance and amount of supervision required compared with others of similar ability. About one third were found to have a moderate to severe behavioural/psychiatric problem with aggressive disruptive behaviour being most frequent. Of the two-thirds capable of being interviewed, over three-quarters expressed satisfaction with their present living, work, education and recreation environment and had no desire to return to the institution. Most had few if any meaningful relationships with non developmentally disabled persons other than caregivers. Support agency staff and psychiatric consultants identified additional service needs for those with behavioural/psychiatric problems who may be placed in the community.