Virginie Cobigo

Using Administrative Health Data to Identify Individuals with Intellectual and Developmental Disabilities: A Comparison of Algorithms.

BACKGROUNDnIndividuals 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.nnnMETHODSnThe 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.nnnRESULTSnThe 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 differencesu2009<u20090.1). More stringent thresholds increased the percentage of psychiatric co-morbidity and decreased the percentages of women and urban residents in the identified cohorts (standardised differencesu2009=u20090.12 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.nnnCONCLUSIONSnThe 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.

Are Cervical and Breast Cancer Screening Programmes Equitable? The Case of Women with Intellectual and Developmental Disabilities.

BACKGROUNDnEffective 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.nnnMETHODnThis 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.nnnRESULTSnThe 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.nnnCONCLUSIONSnFindings suggest that women with IDD experience inequities in their access to cancer screening. Public health interventions targeting this population should be implemented.

Unmet Needs of Families of School-Aged Children with an Autism Spectrum Disorder.

BACKGROUNDnTo aid decision making regarding the allocation of limited resources, information is needed on the perceived unmet needs of parents of school-aged children with an autism spectrum disorder.nnnMATERIALS AND METHODSnA cross-sectional survey was conducted of 101 Canadian families of school-aged children with an autism spectrum disorder.nnnRESULTSnCommonly reported unmet needs were for social activities for the child (78.2%), information about services (77.2%) and continuous service provision (74.3%).nnnCONCLUSIONSnThis study provides insight into needs which have not been met by the service system. Information about the unmet needs of children with an autism spectrum disorder and their families may help policy makers and service providers to develop resources and services that are responsive to their client group.

Beyond an Autism Diagnosis: Children’s Functional Independence and Parents’ Unmet Needs

High demand has resulted in gaps in autism service provision. Our objective was to explore the association between children’s functioning and parents’ perceived unmet needs. We conducted a cross-sectional study of 97 families of school-aged children with an autism spectrum disorder. Log binomial regression was used to examine the relative risk for unmet need. Families of children with high functional independence had lower unmet need than families of children with moderate functional independence (RRxa0=xa00.81, 95% CIxa0=xa00.67-0.99). Those who experienced greater impact of the child’s disability had greater unmet need (RRxa0=xa01.22, 95% CIxa0=xa01.03–1.45). The child’s functioning and its impact on the family provide insight into unmet need which may inform service planning.

Pregnancy in Women With Intellectual and Developmental Disabilities

OBJECTIVEnOur objectives were to describe the general fertility rate (GFR) and age-specific fertility rates (ASFRs) of women with intellectual and developmental disabilities (IDD) and the social and health characteristics of those with a singleton live birth, and to compare these to women without IDD.nnnMETHODSnIn this population-based retrospective cohort study using linked Ontario health and social services administrative data, we identified 18- to 49-year-old women with IDD (N = 21 181) and without IDD (N = 990 776). The GFR and ASFRs (2009) were calculated for both groups and compared using rate ratios (RR) and 95% confidence intervals (CI). Among women with a singleton live birth (N = 423 with, N = 42 439 without IDD), social and health characteristics were compared using Pearsons Chi square tests.nnnRESULTSnThe GFR in women with IDD (20.3 per 1000) was lower than that in women without IDD (43.4 per 1000) (RR 0.47; 95% CI 0.43 to 0.51). ASFRs in 18- to 24-year-olds were similar in both groups. Among women with a singleton live birth, those with IDD were younger and had higher rates of poverty, epilepsy, obesity, and mental health issues. They also had high rates of medication use during pregnancy.nnnCONCLUSIONnIn the largest study of fertility in women with IDD to date, we found that ASFRs are similar in young women with and without IDD. Women with IDD with a singleton live birth experience significant social and health disparities during pregnancy. These findings suggest the need to develop services to support the reproductive health of this vulnerable group.

Lessons Learned From Our Elders: How to Study Polypharmacy in Populations With Intellectual and Developmental Disabilities

Polypharmacy is the concurrent use of multiple medications, including both psychotropic and non-psychotropic drugs. Although it may sometimes be clinically indicated, polypharmacy can have a number of negative consequences, including medication nonadherence, adverse drug reactions, and undesirable drug-drug interactions. The objective of this paper was to gain a better understanding of how to study polypharmacy among people with intellectual and developmental disabilities (IDD). To do this, we reviewed literature on polypharmacy among the elderly and people with IDD to inform future research approaches and methods on polypharmacy in people with IDD. Results identified significant variability in methods used to study polypharmacy, including definitions of polypharmacy, samples studied, analytic strategies, and variables included in the analyses. Four valuable methodological lessons to strengthen future polypharmacy research in individuals with IDD emerged. These included the use of consistent definitions of polypharmacy, the implementation of population-based sampling strategies, the development of clinical guidelines, and the importance of studying associated variables.

Labour and delivery interventions in women with intellectual and developmental disabilities: a population-based cohort study

Background Our objectives were to: (1) examine the occurrence of labour induction, caesarean section, and operative vaginal delivery in women with intellectual and developmental disabilities compared to those without and (2) determine whether pre-pregnancy health conditions and pregnancy complications explain any elevated occurrence of these interventions. Methods We conducted a population-based study using linked Ontario (Canada) administrative data. We identified deliveries to women with (N=3932) and without (N=382u2005774) intellectual and developmental disabilities (2002–2011). Modified Poisson regression was used to estimate adjusted relative risks (aRR) and 95% CIs for interventions, controlling for sociodemographic characteristics. We used generalised estimating equations to determine whether pre-pregnancy health conditions and pregnancy complications explained any statistically significantly elevated aRRs. Results After controlling for socio-demographic characteristics, women with intellectual and developmental disabilities were more likely to have labour inductions (aRR, 1.13; 95% CI 1.06 to 1.20) and caesarean sections (aRR, 1.09; 95% CI 1.03 to 1.16) but not operative vaginal deliveries, compared to the referent group. Pre-pregnancy health conditions explained 12.9% of their elevated aRR for labour induction. Pre-pregnancy health conditions and maternal complications explained 27.8% and 13.3%, respectively, of their elevated aRR for caesarean section. Conclusions Women with intellectual and developmental disabilities are slightly more likely to have labour inductions and caesarean sections than women without intellectual and developmental disabilities. The elevated occurrence of these interventions is not fully explained by their pre-pregnancy health conditions or pregnancy complications. Non-medical issues should be evaluated for their influence on the timing of labour and delivery in this population.

Uptake of Colorectal Cancer Screening among Ontarians with Intellectual and Developmental Disabilities

Under-screening for cancer may contribute to a greater disease burden in individuals with intellectual and developmental disabilities (IDD) as their life expectancy increases. In 2008, the province of Ontario launched Canada’s first population-based colorectal cancer screening program. Our objectives were to compare the proportions of Ontarians with and without IDD who have undergone colorectal cancer screening and to examine factors associated with screening uptake among Ontarians with IDD. Records for Ontario residents 50–64 years of age were linked across various administrative health and social services datasets to identify individuals with IDD and to select a random sample of the age-equivalent Ontario population without IDD as a comparison group. Logistic regression models were fit to examine the odds of screening uptake among individuals with IDD while controlling for age, sex, urban or rural residence, neighbourhood income quintile, expected use of health care resources, and being enrolled with or seeing a physician in a patient enrolment model (any of several primary care practice models designed to improve patient access and quality of care in Ontario), and to examine the association between these variables and colorectal cancer screening in the IDD population. The odds of having had a fecal occult blood test in the previous two years and being up-to-date with colorectal tests were 32% and 46% lower, respectively, for Ontarians with IDD compared to those without IDD. Being older, female, having a greater expected use of health care resources, and being enrolled with or seeing a physician in a primary care patient enrolment model were all significantly associated with higher odds of having been screened for colorectal cancer in the IDD population. These findings underscore the need for targeted interventions aimed at making colorectal cancer screening more equitable.

The Uptake of Secondary Prevention by Adults with Intellectual and Developmental Disabilities

BACKGROUNDnSecondary 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.nnnMETHODSnLinked 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.nnnRESULTSnOf 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).nnnCONCLUSIONSnAdults 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.

Quality of life and social inclusion across the lifespan: challenges and recommendations

Abstract Objectives: The concepts quality of life (QOL) and social inclusion (SI) have developed somewhat in parallel but to a considerable degree independently over the last few decades. Each has assets and limitations in terms of comprehensive policy and principles. The article introduces the history of these concepts and compares them in terms of policy and application along with recommendations for research and practice. Results: Terms have not been clearly defined particularly in the area of SI and this was also an initial concern with the development of QOL. The principles and concepts in both areas can enrich one another highlighting concerns in practice, policy, and research. Some of the concepts appear contradictory at times and a ‘mission’ approach in application can lead to imbalance in effective decision making. Conclusions: Understanding of the changes in diagnosis and prevalence in intellectual and developmental disability (IDD) is important along with the social implications for the individual and the family, particularly in relation to inclusion in community living. A clearer understanding of the practical aspects of exclusion and necessary balancing between basic family needs and those of the individual with IDD are required in policy and application. The need for more focused understanding of QOL and SI is discussed in relation to greater application of these areas.