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.

Organizational attributes of interprofessional primary care for adults with intellectual and developmental disabilities in ontario, Canada: a multiple case study.

BACKGROUND: Access to high-quality primary care has been identified as a pressing need for adults with intellectual and developmental disabilities (IDD). Adults with IDD live with complex physical and mental health conditions, use health services differently than the general population and continue to face challenges when accessing health services. Interprofessional primary care teams offer comprehensive and coordinated approaches to primary care delivery and are well-positioned to address the needs of adults with IDD and other vulnerable populations. Although interprofessional primary care teams are recommended, there is currently limited understanding of how interprofessional care is delivered and how access to a team of providers improves the health of this population. The aim of this paper is to describe the organizational attributes of interprofessional primary care for adults with IDD within and across models of team-based care in one local health service context. METHODS: A multiple case study was conducted with five interprofessional primary care teams in Ontario, Canada. Multiple methods were used to generate data including: a survey, document review, electronic medical record report and qualitative interviews. Pattern matching was the primary analytic approach for the within and across case analysis. RESULTS: Adults with IDD were found to be a small part of the patient population served and this group was poorly identified in three of five teams. Key organizational attributes that support the delivery of interprofessional primary care for adults with IDD were identified. Two examples of targeted programs of care for this group were also found. Despite the presence of interprofessional health providers in all teams, there were limited organizational processes to engage a wide-range of interprofessional services in the care of this group. There was no consistent reporting of outcomes or processes in place to measure the impact of interprofessional services for this population. CONCLUSIONS: This study provides important insights into the current state of interprofessional primary care for adults with IDD in Ontario and highlight a critical need for further work in the field to develop organizational structures and processes to engage in team-based care and demonstrate the value of the approach for this population.

From premise to practice: Applicability of a consensus statement for supporting adults with IDD who are frail.

BACKGROUND: Study of frailty in adults with intellectual and developmental disabilities (IDD) is relatively new. To build the body of literature, an international consensus statement on how to support adults with IDD as they become frail was developed based on fictional cases. This study examined the face validity and applicability of the consensus statement to real-world care planning. METHOD: Twenty-three care plans for adults with IDD who were classified along the frailty continuum were reviewed. Documented goals, actions and outcomes were coded according to the consensus statement's principles and recommendations. RESULTS: The recommendations 'Improvement and maintenance are viable goals' and 'Intersectoral collaboration is needed' were documented the most often. Attention to the needs of formal and informal caregivers was mentioned the least often in care plans. CONCLUSIONS: This study provides some support for the face validity of the consensus statement and its applicability to supporting adults with IDD who are frail.

Comprehensive preventive care assessments for adults with intellectual and developmental disabilities: Part 2: 2003 to 2014.

OBJECTIVE: To determine if there has been an increase in preventive care among adults with intellectual and developmental disabilities (IDD) as a result of the publication of the Canadian consensus guidelines on the care of adults with IDD in 2006 and 2011. DESIGN: Ecological study. SETTING: Ontario. PARTICIPANTS: The study group consisted of community-dwelling adults with IDD between the ages of 40 and 64 living in Ontario identified in 2009-2010 through administrative health and social services data. The comparison group consisted of a propensity-score-matched sample of the remaining Ontario population. MAIN OUTCOME MEASURES: A combined measure of a health examination or a Primary Care Quality Composite Score (PCQS) of 0.6 or greater, or both. Both measures were identified using administrative health data. RESULTS: Adults with IDD were 2.04% more likely to have had a health examination or a PCQS of 0.6 or greater before 2011-2012 and 1.70% less likely after 2011-2012. Adults without IDD were 1.03% more likely before 2011-2012 and 13.74% less likely after 2011-2012 to have had a health examination or a PCQS of 0.6 or greater. Male patients with IDD were 15.60% more likely and male patients without IDD were 7.39% less likely to have had a health examination or PCQS of 0.6 or greater compared with female patients. CONCLUSION: Despite the publication of the guidelines there has not been a corresponding increase in the uptake of the annual health examination or in the quality of preventive care among adults with IDD. More is required to reduce this documented inequity in care.

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.

Implementation of Health Links coordinated care plans for adults with intellectual and developmental disabilities: Cross-sectoral pilot program.

PROBLEM ADDRESSED: Adults with intellectual and developmental disabilities (IDD) are a complex population that could benefit from improved care coordination across health and social sectors, as they experience poorer health and have higher rates of emergency department use and hospitalization due to ambulatory care-sensitive conditions. OBJECTIVE OF PROGRAM: To pilot a novel, enhanced model of care coordination for complex patients with IDD. PROGRAM DESCRIPTION: Health Links is a provincial care-coordination program for patients with complex health care needs. This pilot program adapted Health Links to include a guide and training specific to adults with IDD to ensure that these patients' needs were met and high-quality, efficient care was provided. CONCLUSION: A tailored care-coordination approach for adults with IDD was able to identify complex patients in need and successfully bridge cross-sectoral care.

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.

How best to support individuals with IDD as they become frail: Development of a consensus statement.

BACKGROUND: While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. METHOD: An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. RESULTS: There is agreement that person-centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. CONCLUSION: The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revisited and revised.

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

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.

Comprehensive preventive care assessments for adults with intellectual and developmental disabilities: Part 1: How do we know if it is happening?

OBJECTIVE: To determine how best to measure the provision of comprehensive preventive care assessment of adults with intellectual and developmental disabilities (IDD). DESIGN: Cross-sectional study. SETTING: Ontario. PARTICIPANTS: Adults with IDD between 40 and 64 years of age in 2013 and 2014. MAIN OUTCOME MEASURES: Health examination was defined using the Ontario Health Insurance Plan billing data fee code A003 (with diagnostic code 917 or 319) or fee code K131, and the Primary Care Quality Composite Score (PCQS), a measure combining 7 different screening maneuvers (lipid, glucose, breast cancer, cervical cancer, colorectal cancer, eye, and hemoglobin A1c screening), was identified using administrative health data. RESULTS: A total of 28 825 adults with IDD were identified in 2013 and 2014. Overall, 12.1% of adults with IDD received a health examination; 51.2% received a high (≥ 0.6) PCQS. Male patients were more likely to have received all of their eligible screening maneuvers if they had had a health examination compared with female patients (odds ratio of 5.73 vs 3.99, respectively). CONCLUSION: Less than 60% of adults with IDD appear to be receiving comprehensive preventive care. Future studies assessing the quality of preventive care received by adults with IDD should combine health examination billing codes and the PCQS.

Market Segmentation as a Tool to Inform Health and Social Services Policy and Planning: The Case of Autism Spectrum Disorder and Intellectual Disability.

In the absence of complete public surveillance data, estimating the prevalence and needs of sub-groups of heterogeneous populations is nonetheless critical to properly inform health and social services planning and policy. We thus introduce market segmentation as an innovative tool for health and social services planners and policy makers. Segmentation is a process whereby broad populations are categorized into sub-groups with common characteristics and needs. Using the example of autism spectrum disorder and/or intellectual disability in Quebec, Canada, we triangulate available data and mathematical problem solving to present a portrait of the varying support needs of this under-served, yet growing, population.

Out of School and Into Distress: Families of Young Adults with Intellectual and Developmental Disabilities in Transition.

BACKGROUND: The transition period out of the educational system can be a source of stress for parents of young adults with intellectual and developmental disabilities, as families lose the support and respite offered by schools. MATERIALS AND METHODS: Using a before and after design nested within a 24-month follow-up study of parents seeking adult developmental services for their children, parents' perception of distress was measured using the Brief Family Distress Scale (Journal of Child and Family Studies, 20, 2011, 521) and their perception of helpfulness of formal supports was assessed using the Family Support Scale (Journal of Individual, Family, and Community Wellness, 1, 1984, 45). RESULTS: Parents reported significantly higher levels of distress after their child transitioned out of school. Employed parents and parents of a child with an autism spectrum disorder are at increased risk for distress. CONCLUSIONS: Families fare worse once their adult children are no longer in school, although this is not associated with a reduction in the perception of the helpfulness of formal supports.

Stakeholders' Perspectives towards the Use of the Comprehensive Health Assessment Program (CHAP) for Adults with Intellectual Disabilities in Manitoba.

BACKGROUND: No standardized tool is used in Canada for comprehensive health assessments of adults with intellectual disabilities. This study was conducted to determine the feasibility of implementing the Comprehensive Health Assessment Program (CHAP) in Manitoba, Canada. METHOD: This was a qualitative study using a purposive sample of physicians, nurse practitioners, support workers and families. Data were collected through individual interviews and focus groups and were analysed using content analysis. RESULTS: Use of the CHAP was perceived as beneficial for persons with intellectual disabilities. Improved continuity of care was of the reported benefits. Six barriers for the future implementation of the CHAP were identified including the time required to complete the CHAP, and the perceived lack of physicians' willingness to do comprehensive assessments. CONCLUSION: The future implementation of the CHAP was strongly supported. For its successful implementation, training of healthcare professionals and support staff and change in regulations and policies were recommended.

Organising healthcare services for persons with an intellectual disability.

BACKGROUND: When compared to the general population, persons with an intellectual disability have lower life expectancy, higher morbidity, and more difficulty finding and obtaining healthcare. Organisational interventions are used to reconfigure the structure or delivery of healthcare services. This is the first update of the original review. OBJECTIVES: To assess the effects of organisational interventions of healthcare services for the mental and physical health problems of persons with an intellectual disability. SEARCH METHODS: For this update we searched CENTRAL, MEDLINE, EMBASE, CINAHL and other databases, from April 2006 to 4 September 2015. We checked reference lists of included studies and consulted experts in the field. SELECTION CRITERIA: Randomised controlled trials of organisational interventions of healthcare services aimed at improving care of mental and physical health problems of adult persons with an intellectual disability. DATA COLLECTION AND ANALYSIS: We employed standard methodological procedures as outlined in the Cochrane Handbook of Systematic Reviews of Interventions, in addition to specific guidance from the Cochrane Effective Practice and Organisation of Care (EPOC) Group. MAIN RESULTS: We identified one new trial from the updated searches.Seven trials (347 participants) met the selection criteria. The interventions varied but had common components: interventions that increased the intensity and frequency of service delivery (4 trials, 200 participants), community-based specialist behaviour therapy (1 trial, 63 participants), and outreach treatment (1 trial, 50 participants). Another trial compared two active arms (traditional counselling and integrated intervention for bereavement, 34 participants).The included studies investigated interventions dealing with the mental health problems of persons with an intellectual disability; none focused on physical health problems. Four studies assessed the effect of organisational interventions on behavioural problems for persons with an intellectual disability, three assessed care giver burden, and three assessed the costs associated with the interventions. None of the included studies reported data on the effect of organisational interventions on adverse events. Most studies were assessed as having low risk of bias.It is uncertain whether interventions that increase the frequency and intensity of delivery or outreach treatment decrease behavioural problems for persons with an intellectual disability (two and one trials respectively, very low certainty evidence). Behavioural problems were slightly decreased by community-based specialist behavioural therapy (one trial, low certainty evidence). Increasing the frequency and intensity of service delivery probably makes little or no difference to care giver burden (MD 0.03, 95% CI -3.48 to 3.54, two trials, moderate certainty evidence). It is uncertain whether outreach treatment makes any difference for care giver burden (one trial, very low certainty evidence). There was very limited evidence regarding costs, with low to very low certainty evidence for the different interventions. AUTHORS' CONCLUSIONS: There is very limited evidence on the organisation of healthcare services for persons with an intellectual disability. There are currently no well-designed studies focusing on organising the health services of persons with an intellectual disability and concurrent physical problems. There are very few studies of organisational interventions targeting mental health needs and the results of those that were found need corroboration. There is an urgent need for high-quality health services research to identify optimal health services for persons with an intellectual disability and concurrent physical problem.

From Framework to Practice: Person-Directed Planning in the Real World.

BACKGROUND: Person-directed planning (PDP) is an approach to planning supports that aims to redistribute power from the service system to individuals with intellectual and developmental disabilities (IDD) and natural supports, improve relationships and build community. To do this, the right people with the right attitudes engaging in the right actions are needed. This paper examines how key elements in PDP contribute to successes in planning. MATERIALS/METHODS: Researchers worked with three planning teams from different community service agencies using participatory action research techniques (i.e. free list and pile sort, Socratic wheel, whys/hows exercise). RESULTS: Most key elements of PDP were relevant to each team. Perceptions of which had most contributed to planning successes differed. CONCLUSIONS: The various elements of PDP are used by and useful to planning teams, although some may be more relevant to some successes than others because of specific goals, or the person's strengths and needs.

Informal Support and Burden among Parents of Adults with Intellectual and/or Developmental Disabilities.

BACKGROUND: Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. METHODS: The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. RESULTS: Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. CONCLUSIONS: Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated.

The Association Between Nutritional Adequacy and Long-Term Outcomes in Critically Ill Patients Requiring Prolonged Mechanical Ventilation: A Multicenter Cohort Study.

OBJECTIVE: To examine the association between short-term nutritional adequacy received while in the ICU and long-term outcomes including 6-month survival and health-related quality of life in critically ill patients requiring prolonged mechanical ventilation. DESIGN: Retrospective analysis of data prospectively collected in the context of a multicenter randomized controlled trial. SETTING: An international sample of ICUs. PATIENTS: Adult patients who were mechanically ventilated for more than 8 days in the ICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Nutritional adequacy was obtained from the average proportion of prescribed calories received over the amount prescribed during the first 8 days. Survival status and health-related quality of life as assessed using the Short-Form 36 v2 were obtained at 3- and 6 months post ICU admission. Of the 1,223 patients enrolled in the randomized controlled trial, 475 met the inclusion criteria for this study. At 6-month follow-up, 302 of the 475 patients (64%) were alive. Survival time in those who received low nutritional adequacy was significantly shorter than those who received high nutritional adequacy while adjusting for important covariates (adjusted hazard ratio, 1.7; 95% CI, 1.1-2.6). At 3-month follow-up, a 25% increase in nutritional adequacy was associated with improvements in Physical Functioning and Role Physical of 7.3 (p = 0.02) and 8.3 (p = 0.004) points, respectively. At 6-month follow-up, adjusted increases in Physical Functioning and Role Physical scores for every 25% increase in nutrition adequacy became smaller and were no longer statistically significant (adjusted estimate for Physical Functioning = 4.2, p = 0.14; for Role Physical = 3.2, p = 0.25). CONCLUSIONS: Greater amounts of nutritional intake received during the first week in the ICU were associated with longer survival time and faster physical recovery to 3 months but not 6 months post ICU discharge in critically ill patients requiring prolonged mechanical ventilation. Current recommendations to underfeed critically ill patients may cause harm in some long-stay patients.

Using an accumulation of deficits approach to measure frailty in a population of home care users with intellectual and developmental disabilities: an analytical descriptive study.

BACKGROUND: The aging population of adults with intellectual and developmental disabilities (IDD) is growing. In the general aging population, frailty is commonly used to predict adverse health outcomes, including hospital use, death, and admission to long-term care. However, existing frailty measures are less appropriate for aging persons with IDD, given their pre-existing conditions and limitations. An accumulation of deficits approach, which is now widely used to describe frailty in the general population, may be more suitable for persons with IDD. Frailty measures specific to persons with IDD have not been widely studied. METHODS: Using pre-determined criteria, a frailty index (FI) specific to persons with IDD was developed based on items in the Resident Assessment Instrument - Home Care (RAI-HC), and using the assessments of 7,863 individuals with IDD in Ontario (aged 18-99 years) admitted to home care between April 1(st), 2006 and March 31(st), 2014. FI scores were derived by dividing deficits present by deficits measured, and categorized into meaningful strata using stratum-specific likelihood ratios. A multinomial logistic regression model identified associations between frailty and individual characteristics. RESULTS: The resulting FI is comprised of 42 deficits across five domains (physiological, psychological, cognitive, social and service use). The mean FI score was 0.22 (SD = 0.13), equivalent to 9 deficits. Over half of the cohort was non-frail (FI score < 0.21), while the remaining were either pre-frail (21 %, FI score between 0.21 and 0.30) or frail (27 %, FI score > 0.30). Controlling for individual characteristics, women were more likely to be frail compared to men (OR = 1.39, 95 % CI: 1.23-1.56). Individuals who were frail were significantly more likely to have a caregiver who was unable to continuing caring (OR = 1.86, 95 % CI: 1.55-2.22) or feeling distressed (OR = 1.54, 95 % CI: 1.30-1.83). Living with a family members was significantly protective of frailty (OR = 0.35, 95 % CI: 0.29-0.41), compared to living alone. CONCLUSIONS: Using the FI to identify frailty in adults with IDD is feasible and can be incorporated into existing home care assessments. This could offer case managers assistance in identifying at-risk individuals. Future analyses should evaluate this measure's ability to predict future adverse outcomes.

Care of adults with developmental disabilities: Effects of a continuing education course for primary care providers.

OBJECTIVE: To evaluate the effects of an interdisciplinary, guideline-based continuing education course on measures related to the care of adults with developmental disabilities (DD). DESIGN: Before-and-after study with a control group. SETTING: Ontario. PARTICIPANTS: Forty-seven primary care providers (physicians, registered nurses, and nurse practitioners). INTERVENTION: Participants either only received reference material about primary care of people with DD (control group) or participated in a continuing education course on primary care of people with DD in addition to receiving the reference material (intervention group). MAIN OUTCOME MEASURES: Participants reported on 5 key measures related to care of adults with DD: frequency of using guidelines, frequency of performing periodic health examinations, frequency of assessing patients who present with behaviour changes, level of comfort while caring for adults with DD, and knowledge of primary care related to adults with DD. RESULTS: Over time, the intervention group showed significant increases in 4 of the 5 key measures of care compared with the control group: the frequency of guideline use (P < .001), frequency of assessment of patients' behaviour change (P = .03), comfort level in caring for people with DD (P = .01), and knowledge of primary care related to adults with DD (P = .01). CONCLUSION: A continuing education course on primary care of adults with DD is a useful interdisciplinary model to train health professionals who provide primary care services to these patients.

Understanding Information About Mortality Among People with Intellectual and Developmental Disabilities in Canada.

BACKGROUND: This paper reviews what is currently known about mortality among Canadians with intellectual and developmental disabilities and describes opportunities for ongoing monitoring. METHODS: In-hospital mortality among adults with intellectual and developmental disabilities in Ontario was examined using hospital data. Mortality was compared between age-, sex- and residence area-matched groups of Manitobans with and without intellectual and developmental disabilities using linked administrative data. A retrospective cohort study of mortality among individuals with intellectual and developmental disabilities in a region of Ontario focused on measuring excess mortality and risk factors. FINDINGS: There is evidence of excess mortality in persons with intellectual and developmental disabilities in Canada. Some of the excess is attributable to comorbidities that are more common in this population. Women may have a greater risk of death than men. Excess mortality occurs at all ages but is more pronounced in early life. DISCUSSION: High-quality ongoing monitoring of mortality among individuals with intellectual and developmental disabilities is possible in Canada. Examination of sex differences should be a priority.