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.

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.

Stakeholder Perspectives on Interprofessional Primary Care for Adults With Intellectual and Developmental Disabilities in Ontario, Canada.

Access to high-quality primary care has been identified as a pressing need for adults with intellectual and developmental disabilities (IDD). 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. The overall aim of this article is to describe the current provision of interprofessional primary care for adults with IDD from the perspectives of patients, caregivers, and health providers. Results provide important insights into the current state of practice and highlight a critical need for further work in the field to develop processes to engage in team-based care and demonstrate the value of the approach for this population.

COVID-19 precautions experienced by a sample of adults with intellectual and developmental disabilities.

PURPOSE: This study describes factors associated with COVID-19 precautions (i.e., self-isolation and the use of personal protective equipment) among a sample of adults with intellectual and developmental disabilities (IDD) in Ontario, Canada. METHODS: The sample included 756 home care recipients with IDD who did not test positive for COVID-19 between March 2020 and July 2021. Among these, some received COVID-19 precautions. Precaution data were obtained from a large metropolitan organization serving persons with IDD in Ontario, and linked to home care assessment data. Unadjusted and adjusted odds ratios with 95% confidence intervals were calculated using logistic regression models to examine the association between COVID-19 cautions and demographic and clinical factors. Effect modification and interactions were explored. RESULTS: One hundred twenty-seven (16.8%) home care clients experienced precautions. After adjustment, congregate setting, aggression, and limited mobility were significantly associated with COVID-19 precautions. Age modified the relationship between congregate setting and precautions. CONCLUSIONS: Pandemic responses need to recognize the impact on subgroups of adults with IDD, such as those living in congregate settings (including younger individuals) or engaging in responsive behaviors. How these precautions impacted individuals-in the short and long term-warrants further investigation.

Short Report: The influence of congregate setting on positive COVID-19 tests among a high-risk sample of adults with intellectual and developmental disability in Ontario.

BACKGROUND: For a number of reasons, persons with intellectual and developmental disability (IDD) are at increased risk of contracting COVID-19. AIMS: This study explored the influence of congregate setting on testing positive for COVID-19 among adults with IDD in Ontario. METHODS AND PROCEDURES: 833 home care recipients with IDD were included, 204 were tested at least once for COVID-19. These data were linked to the homecare assessment data. The association between living in a congregate setting and receiving a positive COVID-19 test was explored using a logistic regression model among the total sample and those tested for COVID-19. OUTCOMES AND RESULTS: 77 individuals tested positive for COVID-19 (9.24 %). Congregate setting, age, aggression, and mobility were significantly associated with receiving a positive COVID-19 test in the total sample. Among the subgroup, congregate setting and age were significant. CONCLUSION AND IMPLICATIONS: Adults with IDD have an increased risk for positive COVID-19 tests at younger ages than other high-risk populations, such as elderly persons. These findings confirm the vulnerability of adults with IDD living in group settings to COVID-19. As such, they should be prioritized when COVID-19 prevention and public health strategies, including vaccination and boosters, are introduced.

A scoping review documenting cancer outcomes and inequities for adults living with intellectual and/or developmental disabilities.

INTRODUCTION: Emerging evidence suggests adults with intellectual and/or developmental disabilities (IDD) may be at risk of inequities in cancer experiences and outcomes. Individuals with IDD may experience multiple barriers that could worsen outcomes and experience. These barriers may be connected to features of IDD or the healthcare system overall. Future research and program planning to support adults with IDD and cancer must be informed by evidence that acknowledges potential disparities, underlying determinants, and knowledge deficits. OBJECTIVE: We conducted a scoping review to systematically map the evidence describing and comparing cancer-related outcomes along the cancer continuum from risk to mortality for adults with IDD. We identified specific factors observed to influence those outcomes. METHODS: We followed the expanded Arksey & O'Malley framework for conducting the scoping review. We searched for literature in PubMed and Embase databases. We abstracted cancer-related data, IDD-related data, and data related to physical and social determinants of health. RESULTS: Of the 2796 studies retrieved, 38 were included for review. Most studies focused on screening outcomes and experiences. Studies reported that adults with IDD experienced inequities at various points along the cancer continuum. Numerous social and physical determinants of health influenced the experiences and outcomes of adults with IDD. CONCLUSION: This scoping review identified significant gaps in the literature. Of note was the focus on cancer screening and lack of attention to larger systems of oppression that may influence poor cancer experiences and outcomes for adults with IDD. There is strong need to improve both quality and quantity of research in this area.

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.

Early postoperative follow-up reduces risk of late severe nutritional complications after Roux-En-Y gastric bypass: a population based study.

BACKGROUND: Severe nutritional complications can occur following Roux-en-Y gastric bypass (RYGB). Adherence to follow-up visits can reduce the risk of many bariatric surgery complications, but whether this applies to severe nutritional complications is unknown. OBJECTIVES: Determine the association between adherence to follow-up visits after RYGB and risk of severe nutritional complications. SETTING: Multicenter publicly-funded Ontario Bariatric Network. METHODS: Retrospective cohort study of Ontario adults participating in the Ontario Bariatric Registry who underwent RYGB between January 1, 2009, and December 31, 2015. The primary outcome was a severe nutritional complication (hospital admission with malnutrition or nutrient deficiency) occurring 1 year or more after RYGB. The primary exposure was adherence to postoperative follow-up visits, occurring at 3, 6, and 12 months postoperatively, and categorized as perfect (3 visits), partial (1-2 visits), or none. Cox proportional hazards modeling quantified the association between adherence to follow-up visits and the primary outcome using hazard ratios (HR). RESULTS: In total, 9105 adults (84% female, age 44.7 ± 10.3 yr) met study criteria. Mean preoperative body mass index (BMI) was 48.6 kg/m2. First year follow-up attendance was: 51.7% perfect, 31.6% partial, and 16.7% none. Median time in the study was 3.4 years. Severe nutritional complications occurred in 1.1% of patients. Compared with perfect follow-up, patients with no follow-up (HR 3.09, 95% CI 1.74-5.50) and partial follow-up (HR 1.94, 95% CI 1.25-3.03) had an increased risk of severe nutritional complications. CONCLUSION: Adherence to follow-up visits during the first year after RYGB is independently associated with reduction in the risk of subsequent severe nutritional complications.

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.

Severe nutritional complications after bariatric surgery in Ontario adults: a population-based descriptive study.

BACKGROUND: Bariatric surgery is the most effective treatment for severe obesity but carries potential for significant complications. Severe postoperative nutritional complications are believed to be rare, but few studies have described them. OBJECTIVES: Describe incidence and factors associated with severe nutritional complications after adult bariatric surgery. SETTING: Multicenter publicly funded Ontario Bariatric Network. METHODS: Retrospective population-based descriptive study of Ontario adults undergoing bariatric surgery between January 1, 2009 and December 31, 2015. The primary outcome was a severe nutritional complication (hospital admission with malnutrition or nutrient deficiency). Major nutrient deficiencies, invasive nutrition support, and death are described. Data were obtained from administrative databases in ICES. Detailed patient data were also obtained for a subset of patients participating in the Ontario Bariatric Registry. RESULTS: Of Ontario adults, 18,783 (81.8% female, mean age 45.1 ± 10.6 yr) underwent bariatric surgery during the study period (88.8% Roux-en-Y gastric bypass, 10.8% sleeve gastrectomy). There were 57.1% in Ontario Bariatric Registry, with mean preoperative body mass index 49.3 ± 8.0 kg/m2. Of patients, 381 (2%) experienced a severe nutritional complication. The incidence rate was 4.5 per 1000 person-years of follow-up and risk was constant over time. The most common deficiencies were iron and protein. Factors associated with severe nutritional complication included younger age, major co-morbidities, low socioeconomic status, surgical or perioperative complication, imperfect follow-up attendance, greater weight loss during the first year, and drop in albumin at 6 months. CONCLUSIONS: The risk of severe nutritional complications after bariatric surgery is low but similar to that of other major bariatric surgery complications.

Adults with intellectual and developmental disabilities and interprofessional, team-based primary health care: a scoping review.

OBJECTIVE: This scoping review aimed to examine the state of the evidence for interprofessional, team-based primary health care for adults with intellectual and developmental disabilities. INTRODUCTION: Adults with intellectual and developmental disabilities are a complex, vulnerable population known to experience health inequities. Interprofessional primary health care teams are recommended to improve access to comprehensive and coordinated health care for these individuals. Limited information is available regarding what services interprofessional primary health care teams provide and how services are evaluated specific to the care of this population. INCLUSION CRITERIA: This scoping review considered all studies that referenced individuals with intellectual and/or developmental disabilities who were 18 years or older. It considered all studies that referred to health care provision within a primary health care context. All studies that discussed the provision of interprofessional primary health care services were included. "Interprofessional primary health care team" was the term used to describe services provided by health providers (e.g. physicians, nurse practitioners, nurses, dietitians, social workers, mental health workers, occupational therapists, physical therapists) working in a team-based model of care. METHODS: This scoping review was conducted in accordance with JBI methodology for scoping reviews. Quantitative, qualitative, and mixed methods study designs were considered for inclusion. In addition, systematic reviews, program descriptions, clinical reviews, and opinion papers were considered. Studies published in English and French were included. The period considered was from 2000 to the date of the searches (July and August 2018 for bibliographic databases and January 2019 for the final searches of unpublished studies and selected papers from key authors). RESULTS: The search identified 2761 records. Despite the global search strategy, only 20 records were included in the final review, mainly consisting of work based in the United States and Canada. Results were heterogeneous and descriptive in nature, consisting of cross-sectional designs, program descriptions, and clinical reviews. The findings represent only a few distinct interprofessional primary health care team models of care and multiple contributions from a small pool of researchers. Roles for physicians, nurse practitioners, nurses, social workers, and mental health providers were identified. Ten studies identified either patient-reported outcomes or health-utilization outcomes. Overall, there was no consistent reporting of outcomes across studies, and outcomes specifically related to many interprofessional services were not captured. Although interprofessional, team-based approaches are supported at a policy and practice level, the concept of interprofessional primary health care for this population remains understudied and is challenged by differences in primary health care provision across the world, complexity in how the field is defined, as well as a lack of consistent reporting of the organizational attributes and processes that support interprofessional primary health care provision. CONCLUSIONS: To fully realize the potential of interprofessional primary health care teams, health services research is needed to describe organizational attributes and processes, and evaluate interventions for this population. Engaging in this work will ultimately provide a more fulsome evidence base to support high-quality, interprofessional primary health care provision for adults with intellectual and developmental disabilities.

Identification of Pediatric Autism Spectrum Disorder Cases Using Health Administrative Data.

Administrative data are frequently used to identify Autism Spectrum Disorder (ASD) cases in epidemiological studies. However, validation studies on this mode of case ascertainment have lacked access to high-quality clinical diagnostic data and have not followed published reporting guidelines. We report on the diagnostic accuracy of using readily available health administrative data for pediatric ASD case ascertainment. The validation cohort included almost all the ASD-positive children born in British Columbia, Canada from April 1, 2000 to December 31, 2009 and consisted of 8,670 children in total. 4,079 ASD-positive and 2,787 ASD-negative children were identified using Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R) assessments done through the British Columbia Autism Assessment Network (BCAAN). An additional 1,804 ADOS/ADI-R assessed ASD-positive children were identified using Ministry of Education records. This prospectively collected clinical data (the diagnostic gold standard) was then linked to each child's physician billing and hospital discharge data. The diagnostic accuracy of 11 algorithms that used the administrative data to assign ASD case status was assessed. For all algorithms, high positive predictive values (PPVs) were observed alongside low values for other measures of diagnostic accuracy illustrating that PPVs alone are not an adequate measure of diagnostic accuracy. We show that British Columbia's health administrative data cannot reliably be used to discriminate between children with ASD and children with other developmental disorders. Utilizing these data may result in misclassification bias. Methodologically sound, region-specific validation studies are needed to support the use of administrative data for ASD case ascertainment. Autism Res 2020, 13: 456-463. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Health administrative data are frequently used to identify Autism Spectrum Disorder (ASD) cases for research purposes. However, previous validation studies on this sort of case identification have lacked access to high-quality clinical diagnostic data and have not followed published reporting guidelines. We show that British Columbia's health administrative data cannot reliably be used to discriminate between children with ASD and children with other developmental disorders.

Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities.

INTRODUCTION: There is increasing attention on the cancer burden for adults with intellectual and developmental disabilities (IDD). Emerging evidence suggests there are differences in cancer experiences and outcomes for individuals living with IDD, from risk through survivorship. These differences may be attributed to features of the IDD, such as cognitive deficits and communication, as well as social determinants of health-like lower education levels and ableism. However, there is no comprehensive overview of the literature quantifying these potential disparities and describing the influencing factors. In this paper, we describe a scoping review protocol to systematically review published literature on cancer for adults with IDD. The purpose of this review is to identify differences in cancer risk, stage at diagnosis, treatment and survival along the cancer continuum for adults with IDD and outline potential contributing factors creating these disparities. METHODS AND ANALYSIS: We will follow Arksey and O'Malley's expanded framework for scoping reviews to conduct this review. We will systematically search electronic databases for peer-reviewed, published journal articles to identify appropriate studies in collaboration with a health science librarian. Two reviewers will independently review titles and abstracts followed by a full-text review to determine whether it meets inclusion criteria. A data chart for collecting and sorting information will be developed in consultation with the team. Results will be collated and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews: PRISMA-Scoping Reviews. Extracted information will be summarised quantitatively and qualitatively to meet review objectives. ETHICS AND DISSEMINATION: This scoping review will employ a methodology to identify literature related to cancer outcomes and experiences for adults with IDD. Results will be disseminated to relevant stakeholders who care for and support individuals with IDD at local, provincial and national levels and through publishing findings. By highlighting the disparities in the cancer system and gaps in the research, this scoping review can provide direction for future action.

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.

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.

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.

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.

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.

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.