Breast (female), colorectal, and lung cancer survival in people with intellectual or developmental disabilities: A population-based retrospective cohort study.

OBJECTIVES: Cancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). There is little empirical evidence documenting survival or comparing outcomes to those without IDD. This study investigated the association between IDD and cancer survival among adults with breast (female), colorectal, or lung cancer. METHODS: A population-based retrospective cohort study was conducted in Ontario, Canada, with routinely collected data. Patients with breast, colorectal, or lung cancer were included (2007‒2019). IDD status before cancer was determined using an established administrative data algorithm. The outcomes of interest included death from any cause and death from cancer. Cox proportional hazards models and competing events analyses using multivariable cause-specific hazards regression were completed. Analyses were stratified by cancer type. Interactions with age, sex, and stage at diagnosis, as well as sensitivity analyses, were completed. RESULTS: The final cohorts included 123,695 breast, 98,809 colorectal, and 116,232 lung cancer patients. Individuals with IDD experienced significantly worse survival than those without IDD. The adjusted hazard ratios of all-cause death were 2.74 (95% CI 2.41‒3.12), 2.42 (95% CI 2.18‒2.68), and 1.49 (95% CI 1.34‒1.66) times higher for breast, colorectal, and lung cancer patients with IDD relative to those without. These findings were consistent for cancer-specific deaths. With few exceptions, worse survival for people with IDD persisted regardless of stage at diagnosis. CONCLUSION: People with IDD experienced worse cancer survival than those without IDD. Identifying and intervening on the factors and structures responsible for survival disparities is imperative.

RéSUMé: OBJECTIFS: Le cancer est l'une des principales causes de mortalité chez les personnes vivant avec des déficiences intellectuelles ou des troubles du développement (DI/TD). Il y a peu de preuves empiriques décrivant la survie de ces personnes lorsqu'elles sont atteintes d'un cancer ou comparant leurs résultats à ceux des personnes sans DI/TD. Notre étude porte sur l'association entre les DI/TD et la survie au cancer chez les adultes atteints de cancer du sein (femmes), du colorectum ou du poumon. MéTHODE: Une étude de cohorte rétrospective populationnelle a été menée en Ontario, au Canada, à l'aide de données recueillies systématiquement. Nous avons inclus les patientes et les patients atteints de cancer du sein, du colorectum ou du poumon (2007‒2019). Nous avons identifié la présence des DI/TD avant le cancer à l'aide d'un algorithme de traitement de données administratives reconnu. Les résultats d'intérêt étaient les décès de toutes causes et les décès dus au cancer. Nous avons appliqué des modèles des risques proportionnels de Cox et des analyses des événements concurrents en utilisant la régression multivariée des risques par cause. Nos analyses ont été stratifiées selon le type de cancer. Nous avons tenu compte des interactions avec l'âge, le sexe et le stade au diagnostic et effectué des analyses de sensibilité. RéSULTATS: Les cohortes finales ont inclus 123 695 personnes atteintes de cancer du sein, 98 809 atteintes de cancer colorectal et 116 232 atteintes de cancer du poumon. La survie des sujets ayant des DI/TD a été significativement moins bonne que celle des sujets sans DI/TD. Les rapports de risques instantanés ajustés pour les décès de toutes causes étaient 2,74 fois (IC de 95 % 2,41‒3,12), 2,42 fois (IC de 95 % 2,18‒2,68) et 1,49 fois (IC de 95 % 1,34‒1,66) plus élevés chez les personnes atteintes de cancer du sein, du colorectum et du poumon et ayant des DI/TD que chez les personnes sans DI/TD. Ces constatations ressortent pour tous les décès attribuables à des cancers particuliers. Avec peu d'exceptions, la survie moins bonne pour les personnes ayant des DI/TD persistait quel que soit le stade au moment du diagnostic. CONCLUSION: La survie au cancer était moins bonne chez les personnes ayant des DI/TD que chez celles n'ayant pas de DI/TD. Il est impératif d'identifier les facteurs et les structures responsables de ces disparités dans la survie et d'intervenir en conséquence.

Exploring the complex cognitive, affective and behavioural processes of individuals with intellectual disabilities in financially abusive situations.

BACKGROUND: Understanding the cognitive processes of individuals with intellectual disabilities in financially abusive situations is critical to develop effective prevention strategies. AIMS: This study investigated how persons with intellectual disabilities define and analyse financially abusive situations, and how they would feel and act in situations that they consider abusive. MATERIALS AND METHODS: Twelve participants with intellectual disabilities participated in a semi-structured interview where they were asked to reflect on three vignettes illustrating financial abuse. We analysed the interviews using thematic analysis. FINDINGS: The findings revealed that individuals with intellectual disabilities considered the type of relationship between the victims and the perpetrators, the behavioural patterns of the perpetrators, and their own experiences when interpreting the situation. Furthermore, they discussed their emotional and behavioural reactions to the vignettes. CONCLUSION: This study has important implications in supporting the autonomy and decision-making rights of persons with intellectual disabilities regarding their finances and developing effective preventions against financial abuse among this population.

Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population-based cross-sectional study.

BACKGROUND: Cancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). Although studies have documented lower cancer screening rates, there is limited epidemiological evidence quantifying potential diagnostic delays. This study explores the risk of metastatic cancer stage for people with IDD compared to those without IDD among breast (female), colorectal, and lung cancer patients in Canada. METHODS: Separate population-based cross-sectional studies were conducted in Ontario and Manitoba by linking routinely collected data. Breast (female), colorectal, and lung cancer patients were included (Manitoba: 2004-2017; Ontario: 2007-2019). IDD status was identified using established administrative algorithms. Modified Poisson regression with robust error variance models estimated associations between IDD status and the likelihood of being diagnosed with metastatic cancer. Adjusted relative risks were pooled between provinces using random-effects meta-analyses. Potential effect modification was considered. RESULTS: The final cohorts included 115,456, 89,815, and 101,811 breast (female), colorectal, and lung cancer patients, respectively. Breast (female) and colorectal cancer patients with IDD were 1.60 and 1.44 times more likely to have metastatic cancer (stage IV) at diagnosis compared to those without IDD (relative risk [RR], 1.60; 95% confidence interval [CI], 1.16-2.20; RR, 1.44; 95% CI, 1.24-1.67). This increased risk was not observed in lung cancer. Significant effect modification was not observed. CONCLUSIONS: People with IDD were more likely to have stage IV breast and colorectal cancer identified at diagnosis compared to those without IDD. Identifying factors and processes contributing to stage disparities such as lower screening rates and developing strategies to address diagnostic delays is critical.

Investigating inequalities in cancer staging and survival for adults with intellectual or developmental disabilities and cancer: A population-based study in Manitoba, Canada.

BACKGROUND: Cancer is a leading cause of death among adults living with intellectual or developmental disabilities (IDD). However, few epidemiological studies exist worldwide quantifying inequalities in cancer stage at diagnosis and survival for people with IDD relative to those without IDD. METHODS: A population-based, retrospective cohort study was conducted using provincial health and social administrative data in Manitoba, Canada. Adults (≥18 years) with a cancer diagnosis between 2004 and 2017 were included. Lifetime IDD was identified before the cancer diagnosis using an established algorithm. Modified Poisson regression with robust error variance was used to estimate the association between IDD status and metastatic cancer at diagnosis. Multivariable Cox proportional hazards analyses were used to the effect of IDD on overall survival following the cancer diagnosis. RESULTS: The staging and prognosis cohorts included 62,886 (n = 473 with IDD) and 74,143 (n = 592 with IDD) cancer patients, respectively. People living with IDD were significantly more likely to be diagnosed with metastatic cancer and die following their cancer diagnosis compared to those without IDD (RR=1.20; 95 % CI 1.05-1.38; HR= 1.53; 95 % CI 1.38-1.71). Significant heterogeneity by sex was identified for cancer survival (p = 0.005). DISCUSSION: People with IDD had more advanced cancer stage at diagnosis and worse survival relative to those without IDD. Identifying and developing strategies to address the factors responsible that contribute to these disparities is required for improving patient-centred cancer care for adults with IDD.

Including people with intellectual and other cognitive disabilities in research and evaluation teams: A scoping review of the empirical knowledge base.

We conducted a rapid scoping review of empirical studies to identify how persons with intellectual and other cognitive disabilities have been engaged as active members of research and evaluation teams. We conducted a literature search using a systematic method that accessed peer reviewed studies in relevant library databases and all major evaluation journals. The search resulted in 6,624 potential articles, of which 32 met the inclusion criteria for this study. The findings address three categories of interest: 1) methodological underpinnings and practical justifications for using inclusive approaches, 2) different inclusion processes, and 3) reflections by researchers with and without intellectual and other cognitive disabilities. Findings provide conceptual and practical insights for researchers and evaluators when designing inclusive methods involving persons with intellectual and other cognitive disabilities. Gaps in inclusive research and evaluation are discussed and suggestions for future research are proposed.

Measuring social isolation in older adults: A rapid review informing evidence-based research and practice.

OBJECTIVES: Older adults account for 18.5% of the Canadian population and are at risk of experiencing social isolation, compared to other age groups. Researchers define social isolation as a lack of social contact and relationships, but many social isolation measures do not reflect this definition. The aim of our study is to review the existing measures of social isolation with older adults to recommend evidence-based measures to researchers and practitioners. METHODS: We conducted a rapid review on PsycInfo and PsycTests. We included articles that were written in English or French, were peer-reviewed, used an older adult sample, included a self-report social isolation measure, and reported psychometric information. RESULTS: Following exclusion of ineligible articles, 12 measures were available for analysis. We further categorized the measures into: five most recommended measures, five measures that require further research, and two measures not recommended for use with older adults. CONCLUSIONS: We observed a range of measures with varying suitability to be used with older adults; some were empirically driven but did not have strong psychometric properties, or vice-versa. CLINICAL IMPLICATIONS: It is imperative that interventions aimed to address social isolation in older adults use evidence-based measures to assess progress and report treatment effectiveness.

Service Use Patterns by Children With Down Syndrome in a Canadian Region.

Children with Down syndrome require services from different sectors over time to optimize health and development, however, there is little information on longitudinal, cross-sector service use. Parents of children with Down syndrome attending a Canadian children's hospital participated in semistructured interviews covering life-time multiple sector service use. Five key service patterns were identified: (1) primary care physicians playing a circumscribed role; (2) a marked shift in public habilitative service receipt from development agencies in the preschool years to exclusive school delivery after school entry; (3) families obtaining private services to address gaps from public sector services; (4) a prominent role for parents to identify additional services; and (5) service variability as a function of timing and severity of medical comorbidity.

Accessibility of child protection investigations during pandemic: A qualitative analysis of court proceedings.

BACKGROUND: Qualitative research using published court records to examine contextual factors that contribute to child protection decisions in cases involving parents with intellectual disabilities is limited, particularly during the COVID-19 pandemic. METHOD: The present study conducted qualitative content analysis on 10 published Ontario court cases to study child protection decision-making between 2019 and 2021. RESULTS: The findings corroborated previous literature with nine out of 10 cases resulting in loss of child custody. Four major themes emerged from content analysis: (1) Impact of COVID-19 pandemic on cases; (2) Systemic barriers to accessibility; (3) Attitudes and bias toward parents with intellectual disabilities; and (4) Ultimate reliance on intellectual disability status for final custody decision. CONCLUSIONS: Conducting content analysis on published court cases is useful in learning about accessibility barriers for parents with intellectual disabilities and may help in understanding the impact of the COVID-19 pandemic on the child protection system.

Caregivers' Role in Cybersecurity for Aging Information Technology Users with Intellectual Disabilities.

Information technology (IT) users with intellectual disabilities (ID) are likely to experience online privacy violations without adequate support from their caregivers. Given that aging users face additional challenges when using IT than their younger counterparts, the goal of this exploratory study is to investigate caregivers' strategies and barriers for helping to protect the privacy of aging IT users with ID. Six caregivers (four paid caregivers, two family members) of aging users with ID completed a series of six focus groups about their experiences assisting the people they support with using IT, including their strategies and barriers for helping to protect these users' privacy. Participants were also asked about their own attitudes and experiences related to online privacy and information security. Based on our inductive thematic analysis of the qualitative data, participants used three main strategies to help protect the privacy of aging users with ID: (1) restricting access to personal information, (2) limiting disclosure of personal details, and (3) providing just-in-time instruction and feedback. We also identified four key barriers to privacy protection: (1) limited awareness and knowledge about information security, (2) balancing privacy and autonomy, (3) maintaining professional boundaries, and (4) residential care services' policies. Inclusive and transdisciplinary research is needed to address the elevated privacy and security risks for aging IT users with ID, and provide caregivers with training on how to support this population to use IT safely. Technology developers should create solutions to decrease aging users with ID's dependence on caregivers for privacy protection.

Cross-sector service use patterns among children with developmental disabilities in a district in Canada.

BACKGROUND: There is a lack of information about cross-sector service use by children with developmental disabilities despite their need for services from multiple sectors. METHODS: Responses to service use questions from a parent-completed survey on school-aged children who attended clinics specific for those with developmental disabilities at a Canadian children's hospital were examined. RESULTS: School meetings were the most common of three professional meeting types attended in the last 12 months (64.9%) for the sample of 205 children. Recreational services were the most common of five service types received in the same time period (79.0%). Using ordinal logistic regression models, a higher number of behavioural difficulties was the only variable consistently related to indices of more meeting types (school, physician, other) attended and more service types received (recreation, respite, etc.). CONCLUSIONS: The service relationship with behavioural problems, and not socio-demographic variables, is consistent with a needs-based oriented delivery system.

Protecting the privacy of technology users who have cognitive disabilities: Identifying areas for improvement and targets for change.

INTRODUCTION: Information Technologies (IT) may serve assistive roles that facilitate the interaction of people living with cognitive disabilities (CD) within their environments. However, there are some notable concerns related to privacy threats associated with the use of IT. The purpose of this study was to examine how assistive technology developers may best adapt over time to develop their IT to be resilient against threats to privacy. We therefore focused on the following areas: (1) developers' knowledge and practices related to privacy protection; (2) challenges when applying recommended practices, and; (3) preferred channels to acquire knowledge. METHOD: We conducted semi-structured interviews with ten technology developers who are members of the AGE-WELL network undertaking research and development of assistive technologies to be used by people who have cognitive disabilities. We used an inductive-deductive method for the analysis of qualitative data to examine participant responses and generate themes related to the study goals. RESULTS: Principal themes that emerged from the data include practices specific to populations with CD, challenges to obtaining consent to use of information, and preferred channels to acquire knowledge. CONCLUSION: We identify areas of focus for developing a knowledge mobilization strategy to improve relevant policies and practices.

Antipsychotic initiation among adults with intellectual and developmental disabilities in Ontario: a population-based cohort study.

OBJECTIVES: To describe factors associated with initiating antipsychotics and patterns of persistence to antipsychotic therapy in a large cohort of adults with intellectual and developmental disabilities. DESIGN: Population-based cohort study. SETTING: Ontario, Canada. PARTICIPANTS: Adults with intellectual and developmental disabilities (IDD) in Ontario. OUTCOME MEASURES: We used multivariable logistic regression to investigate patient characteristics associated with antipsychotic initiation. Patient characteristics studied included sociodemographic characteristics, measures of clinical comorbidity and health service use. RESULTS: Among 39 244 individuals eligible for this study, 6924 (17.6%) initiated an antipsychotic over the accrual window, of whom 1863 (26.9%) had no psychiatric diagnosis in the prior 2 years. A number of factors were significantly associated with antipsychotic initiation, including male gender, residence in a group home, prior use of benzodiazepines, antidepressants or cognitive enhancers, a recent emergency department visit or mental health hospitalisation and a visit to a psychiatrist or family physician in the prior 90 days. In a secondary analysis, the association between antipsychotic initiation and age, prior diagnosis of diabetes or myocardial infarction and polypharmacy differed slightly on the basis of whether an individual had a previously diagnosed psychiatric disorder. CONCLUSIONS: Factors associated with the initiation of an antipsychotic differ according to the presence of a psychiatric diagnosis. Given the long duration of antipsychotic use in this population, future research is needed to understand the appropriateness of antipsychotic initiation among adults with IDD and the safety implications of long-term use of these products.

Reproductive Health in Women with Intellectual and Developmental Disabilities in Ontario: Implications for Policy and Practice.

Reproductive healthcare needs of women with intellectual and developmental disabilities (IDD) have received little attention. Using health and social services administrative data in Ontario, Canada, we comprehensively documented the reproductive health of women with IDD, including their fertility rates, pregnancy outcomes and reproductive health after pregnancy. Our findings showed high rates of adverse health outcomes for these women and their babies, supporting the development of reproductive healthcare programs tailored to their unique needs.

What adults with intellectual and developmental disabilities say they need to access annual health examinations: System navigation support and person-centred care.

OBJECTIVE: To gain an understanding of the support needs of adults with intellectual and developmental disabilities (IDD) when scheduling, traveling to, and attending annual health examinations (AHEs). DESIGN: Qualitative study that is part of a large population-level intervention aiming to increase uptake of AHEs among adults with IDD. SETTING: Ontario. PARTICIPANTS: A total of 8 men and 5 women with IDD took part in semistructured interviews about their personal experiences related to AHEs. METHODS: Thematic analysis was used to examine experiences relating to scheduling, traveling to, and attending AHEs. MAIN FINDINGS: Support emerged as the overarching theme. Support included assistance navigating the health care system (assistance scheduling AHEs, reminders to book AHEs, financial assistance, transportation) and person-centred care (respect of privacy and autonomy, communication style, kindness, compassion, rapport with physician, health advocacy, and collaboration). Barriers to this support were also identified (lack of rapport, perception of unfriendliness, perception that the physician is too busy to tend to needs, and perception that the physician did not want to perform AHEs). CONCLUSION: For adults with IDD, system navigation support and person-centred care were central to accessing AHEs. In collaboration with informal caregivers, physicians have an important role in reducing barriers to patients accessing this valuable preventive care opportunity. Physicians can fulfil some of the needs disclosed by adults with IDD related to attending AHEs by offering support for scheduling appointments, by linking patients with IDD to resources that facilitate appointment attendance, and by increasing consultation duration.

A family systems perspective on supporting self-determination in young adults with intellectual and developmental disabilities.

BACKGROUND: This study explored the way families support self-determination in young adults with intellectual and developmental disabilities (IDD) during life transitions. METHOD: Qualitative case studies were conducted with two Canadian families who participated in semi-structured interviews and ethnographic observations every quarter for one year. Analyses were informed by family systems theory and self-determination theory. FINDINGS: Families considered the needs and preferences of the young adults with IDD, suggesting individualized approaches for balancing independence and protection. Families set short-term and long-term goals for increased independence, scaffolded the learning of new skills and collaborated on important choices. Collaboration occurred to the extent that all family members perceived agency in planning and implementing transitions. CONCLUSIONS: Families supported the young adults with IDD in their psychological needs for competence, relatedness and autonomy, which allowed them to experience self-determination. Findings have implications for supporting self-determination and transition planning in the family system.

The Association Between Continuity of Primary Care and Preventive Cancer Screening in Women With Intellectual Disability.

Women with intellectual disability have low screening rates for breast and cervical cancer. This population-based cohort study examined the association between the level of primary care continuity and breast and cervical cancer screening rates in women with intellectual disability. Data were obtained from the Institute for Clinical Evaluative Sciences and the Ontario Ministry of Community and Social Services. Neither high (adjusted OR [aOR] = 1.06; 95% CI: 0.88-1.29) nor moderate (aOR = 1.11; 95% CI: 0.91-1.36) continuity of care were associated with mammography screening. Women were less likely to receive a Pap test with high (aOR = 0.70; 95% CI: 0.64-0.77) and moderate (aOR = 0.81, 95% CI 0.74-0.89) versus low continuity of care. Improving continuity of care may not be sufficient for increasing preventive screening rates.

Are we making a difference in primary care for adults with intellectual and developmental disabilities?

[ABSTRACT]. Objectives. To examine the impact of the dissemination of guidelines to physicians and of a population-level health communication intervention on the percentage of adults with intellectual and developmental disabilities (IDD) receiving preventive care through primary care. Methods. Noninstitutionalized adults with IDD in the province of Ontario, Canada, aged 40 to 64 years were matched to Ontarians without such disabilities each fiscal year (FY) from 2003 to 2016. Health administrative data were used to create a composite measure of receipt of recommended preventive primary care. Age-adjusted rates were used to assess trends, and average two-year rate ratios (RRs) and confidence intervals (CIs) were used to evaluate the effectiveness of the interventions. Results. The number of adults with IDD identified ranged from 20 030 in FY 2003 to 28 080 in FY 2016. The percentage of adults with IDD receiving recommended preventive primary care ranged from 43.4% in 2003 to 55.7% in 2015. Men with IDD had a 53.7% increase across the 13 years, while women with IDD only had a 30.9% increase. When evaluating the impact of the interventions, men with IDD were 4% more likely (RR: 1.04; 95% CI: 1.02–1.05) to receive recommended primary care in FY 2015 and FY 2016 as compared to FY 2009 and FY 2010; in contrast, women with IDD were 5% less likely (RR: 0.95; 95% CI: 0.93–0.98). A comparable drop was observed among women without IDD. Conclusions. Nearly 45% of adults with IDD in Ontario still do not receive recommended preventive care through primary care. Long-term impacts of the interventions introduced in the province may still occur over time, so ongoing monitoring is warranted. Special attention should be given to the preventive care needs of women with IDD.

[RESUMO]. Objetivos. Examinar o impacto da disseminação de diretrizes para médicos é da intervenção de comunicação em saúde em nível populacional sobre a porcentagem de adultos com deficiência intelectual e de desenvolvimento (DID) que recebem cuidados preventivos por meio de atenção primária. Métodos. Adultos não institucionalizados com DID na província de Ontário, Canadá, com idades entre 40 e 64 anos foram comparados com os habitantes de Ontário sem deficiência, em cada exercício fiscal (AF) desde 2003 a 2016. Dados de saúde administrativos foram usados para criar uma medida de ter recebeu cuidados preventivos recomendados. As taxas ajustadas por idade foram usadas para avaliar as tendências, e as razões de frequência (RR) e os intervalos de confiança média (IC) de dois anos foram utilizados para avaliar a eficácia das intervenções. Resultados. O número de adultos com DID identificados variou de 20 030 no AF 2003 para 28 080 no AF 2016. A percentagem de adultos com DID que recebeu cuidados preventivos recomendados variou de 43,4% em 2003 para 55,7% em 2015. Homens com DID mostraram um aumento de 53,7% ao longo dos 13 anos, enquanto as mulheres com DID só apresentaram aumento de 30,9%. Ao avaliar o impacto das intervenções, os homens com DID mostraram uma probabilidade 4% maior (RR: 1,04, IC 95%: 1,02-1,05) de receber cuidados primarios recomendados em os AF 2015 e 2016 em comparação com os AF 2009 e 2010; em contraste, as mulheres com DID tiveram uma probabilidade 5% menor (RR: 0,95, IC 95%: 0,93-0,98). Uma diminuição comparável foi observada entre as mulheres sem DID. Conclusões. Aproximadamente 45% dos adultos com DID em Ontário ainda não recebem cuidados preventivos recomendados através da atenção primária. Os impactos a longo prazo das intervenções introduzidas na província podem ainda ocorrer ao longo do tempo, pelo que é necessária uma monitorização contínua. Atenção especial deve ser dada às necessidades de cuidados preventivos das mulheres com DID.

[RESUMEN]. Objetivos. Examinar el impacto de la diseminación de guías para médicos y de una intervención de comunicación de salud para la población sobre el porcentaje de adultos con discapacidades intelectuales y del desarrollo (DID) que reciben asistencia preventiva a través de la atención primaria. Métodos. Se compararon adultos de 40 a 64 años con DID no institucionalizados de la provincia de Ontario, Canadá, con habitantes de Ontario sin discapacidad en cada año fiscal (AF) desde 2003 hasta 2016. Se utilizaron datos administrativos de salud para crear una medida compuesta indicadora de haber recibido la atención primaria preventiva recomendada. Se usaron tasas ajustadas por edad para evaluar las tendencias y los índices de frecuencia (RR) e intervalos de confianza (IC) promedio de dos años para evaluar la efectividad de las intervenciones. Resultados. El número de adultos con DID identificados varió de 20 030 en el AF 2003 a 28 080 en el AF 2016. El porcentaje de adultos con DID que recibieron la atención primaria preventiva recomendada varió del 43,4% en 2003 al 55,7% en 2015. Los varones con DID presentaron un aumento del 53,7% a lo largo de los 13 años, mientras que las mujeres con DID solo tuvieron un aumento del 30,9%. Al evaluar el impacto de las intervenciones, los varones con DID mostraron un 4% más de probabilidades (RR: 1,04; IC 95%: 1,02-1,05) de recibir la atención primaria recomendada en los AF 2015 y 2016 en comparación con los AF 2009 y 2010; en comparación, las mujeres con DID presentaron un 5% menos de probabilidad (RR: 0,95; IC 95%: 0,93-0,98). Se observó una disminución comparable entre las mujeres sin DID. Conclusiones. Aproximadamente el 45% de los adultos con DID en Ontario aún no reciben la atención preventiva recomendada a través de la atención primaria. Los impactos a largo plazo de las intervenciones introducidas en la provincia aún pueden ocurrir a lo largo del tiempo, por lo que se requiere un monitoreo continuo. Se debe prestar especial atención a las necesidades de atención preventiva de las mujeres con DID.

Contraceptive Provision to Postpartum Women With Intellectual and Developmental Disabilities: A Population-Based Cohort Study.

CONTEXT: Women with intellectual and developmental disabilities who experience pregnancy, like all women, require postpartum care that supports their contraceptive knowledge and decision making. Yet, little is known about the postpartum contraceptive care these women receive, or how it compares with care given to other women. METHODS: A population-based study using linked health and social services administrative data examined provision of postpartum contraceptive care to women who had a live birth in Ontario, Canada, in 2002-2014 and were beneficiaries of Ontario's publicly funded drug plan. Modified Poisson regression was used to compare care between 1,181 women with and 36,259 women without intellectual and developmental disabilities. Outcomes were provision of any nonbarrier contraceptive in the year following the birth and type of method provided. RESULTS: In the first year postpartum, women with intellectual and developmental disabilities were provided with contraceptives at a higher rate than were other women (relative risk 1.3); the difference was significant for both nonsurgical and surgical methods (1.2 and 1.8, respectively). The higher rate of nonsurgical contraceptive provision was explained by provision of injectables (1.9); there were no differences for pills or IUDs. CONCLUSION: Nonbarrier contraceptives may be the most appropriate methods for some women with intellectual and developmental disabilities. However, future research should investigate why women with such disabilities are more likely than others to receive injectable contraceptives, which have possible negative side effects, and surgical contraception, which is irreversible. Research also should investigate how these women perceive their participation in contraceptive decision making.

Antipsychotic Use With and Without Comorbid Psychiatric Diagnosis Among Adults with Intellectual and Developmental Disabilities.

OBJECTIVE: Antipsychotic use is controversial in the management of adults with intellectual and developmental disabilities (IDD) because of inconclusive evidence for efficacy in the absence of a comorbid psychiatric condition, and substantial concerns about adverse effects. We aimed to characterize antipsychotic use among Ontario adults with IDD and compare profiles of those with and without a documented psychiatric diagnosis. METHOD: This population-based study included 51,881 adults with IDD under 65 y as of April 2010 receiving provincial drug benefits in Ontario who were followed until March 2016 to identify those dispensed at least one antipsychotic medication. Profiles of those with and without a psychiatric diagnosis were compared. RESULTS: Overall, 39.2% of adults ( n = 20,316) were dispensed an antipsychotic medication, which increased to 56.4% in a subcohort residing in group homes. Almost one-third (28.91%) of people prescribed an antipsychotic medication did not have a documented psychiatric diagnosis. Those without a psychiatric diagnosis differed considerably from those with a diagnosis. In particular, those without a psychiatric diagnosis were older, less likely to have used antidepressants or benzodiazepines in the year before, and less likely to have used ambulatory and acute care. CONCLUSIONS: Antipsychotic use in IDD is common, and occurs frequently without a psychiatric diagnosis. Attention toward how antipsychotics are prescribed and monitored for people with IDD in Canada is warranted to ensure appropriate prescribing.