Risk for Severe COVID-19 Outcomes among Persons with Intellectual Disabilities, the Netherlands.

The COVID-19 pandemic has disproportionately affected persons in long-term care, who often experience health disparities. To delineate the COVID-19 disease burden among persons with intellectual disabilities, we prospectively collected data from 36 care facilities for 3 pandemic waves during March 2020-May 2021. We included outcomes for 2,586 clients with PCR-confirmed SARS-CoV-2 infection, among whom 161 had severe illness and 99 died. During the first 2 pandemic waves, infection among persons with intellectual disabilities reflected patterns observed in the general population, but case-fatality rates for persons with intellectual disabilities were 3.5 times higher and were elevated among those >40 years of age. Severe outcomes were associated with older age, having Down syndrome, and having >1 concurrent condition. Our study highlights the disproportionate COVID-19 disease burden among persons with intellectual disabilities and the need for disability-inclusive research and policymaking to inform disease surveillance and public health policies for this population.

Risk for Severe COVID-19 Outcomes among Persons with Intellectual Disabilities, the Netherlands.

The COVID-19 pandemic has disproportionately affected persons in long-term care, who often experience health disparities. To delineate the COVID-19 disease burden among persons with intellectual disabilities, we prospectively collected data from 36 care facilities for 3 pandemic waves during March 2020-May 2021. We included outcomes for 2,586 clients with PCR-confirmed SARS-CoV-2 infection, among whom 161 had severe illness and 99 died. During the first 2 pandemic waves, infection among persons with intellectual disabilities reflected patterns observed in the general population, but case-fatality rates for persons with intellectual disabilities were 3.5 times higher and were elevated among those >40 years of age. Severe outcomes were associated with older age, having Down syndrome, and having >1 concurrent condition. Our study highlights the disproportionate COVID-19 disease burden among persons with intellectual disabilities and the need for disability-inclusive research and policymaking to inform disease surveillance and public health policies for this population.

Exploring views on medical care for people with intellectual disabilities: an international concept mapping study.

BACKGROUND: Medical care for people with intellectual and developmental disabilities (IDD) is organized differently across the globe and interpretation of the concept of medical care for people with IDD may vary across countries. Existing models of medical care are not tailored to the specific medical care needs of people with IDD. This study aims to provide an improved understanding of which aspects constitute medical care for people with IDD by exploring how international researchers and practitioners describe this care, using concept mapping. METHODS: Twenty-five experts (researchers and practitioners) on medical care for people with IDD from 17 countries submitted statements on medical care in their country in a brainstorming session, using an online concept mapping tool. Next, they sorted all collected statements and rated them on importance. RESULTS: Participants generated statements that reflect current medical and health care practice, their ideas on good practice, and aspirations for future medical and health care for people with IDD. Based on the sorting of all statements, a concept map was formed, covering 13 aspects that characterize medical and health care for people with IDD across nations. The 13 aspects varied minimally in importance ratings and were grouped into five overarching conceptual themes: (i) active patient role, (ii) provider role, (iii) context of care, (iv) consequences of care for people with IDD, and (v) quality of care. CONCLUSIONS: The themes, clusters and statements identified through this explorative study provide additional content and context for the specific patient group of people with IDD to the dimensions of previous models of medical care.

Cancer treatment and decision making in individuals with intellectual disabilities: a scoping literature review.

Adults with intellectual disabilities face disparities in receipt of cancer-related care, which could contribute to an increase in the rate of cancer-related deaths in this population. Yet, relatively little is known about the optimal cancer treatment or treatment decision making in adults with intellectual disabilities. This scoping review assessed PubMed and Embase for available literature on the description of cancer treatment and treatment decision making in patients with intellectual disabilities, published in English between Jan 1, 2000, and April 30, 2020. We appraised 90 included articles and extracted quotes addressing aspects related to cancer treatment and treatment decision making in patients with intellectual disabilities. Themes and subcategories were subsequently derived. Our findings revealed that the available literature describes that people with intellectual disabilities tend to have less intensive cancer treatment than generally administered, but with little evidence supporting this approach. This finding indicates that this medically vulnerable patient population needs tailored attention in both cancer care and research. We propose changes to practice and conclude by addressing the urgent need to pay specific attention to this patient population.

Out-of-hours primary care for people with intellectual disabilities: interviews in general practice.

BACKGROUND: Out-of-hours primary care for people with intellectual disabilities (ID) involves different groups of health care professionals, who are often not familiar to one another nor to the specific health care needs of this vulnerable population. It is not known to what extend these specific health care needs or organizational factors influence the delivery of out-of-hours primary care for people with ID. OBJECTIVE: The objective of this study is to explore the experiences of health care professionals regarding the medical content and the organizational context of out-of-hours primary care for people with ID. METHODS: Semi-structured interviews were conducted with daily care professionals, triage nurses and general practitioners (GPs) involved in out-of-hours primary care for people with ID in the Netherlands. Interviews were thematically analysed for medical content and organizational context. RESULTS: The analysis resulted in four interconnected themes: (i) uncertainties in the triage assessment of ID patients; (ii) confusion about inter-professional responsibilities; (iii) impact on routines and workflow concerning ID patients and (iv) constraints in the decision-making process. All issues raised were related to the organizational context. CONCLUSIONS: Health care professionals involved in out-of-hours primary care for people with ID indicate that the quality of this care is more influenced by the organizational context than by the medical content. We recommend out-of-hours GP services and care provider services for people with ID to set standards for roles and responsibilities in order to facilitate health care professionals in delivering accessible and high-quality care to this vulnerable population.

Gaining actionable knowledge to improve local health-promoting capacities in long-term care support settings for people with intellectual disabilities.

OBJECTIVE: People with intellectual disabilities (ID) are largely dependent on their environment to live healthily and, in this, ID-support organizations play a vital role. An environmental asset mapping tool for ID-support settings has been developed. This study aims to provide insight into whether or not the tool can provide a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. METHODS: Fifty-seven users from four setting completed the tool on availability, user satisfaction, and dreams regarding social, physical, organizational, and financial assets. RESULTS: The findings provide a comprehensive view of available assets. Together with user satisfaction and dreams for improvements, they provide actionable knowledge for improving the health-promoting capacities of the settings, including: (1) how use of available assets can be improved, (2) the type of assets that should be enriched, and (3) the assets that can be added to the system. CONCLUSION: The asset mapping tool provides a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. PRACTICE IMPLICATIONS: ID-support organizations can use the tool to generate actionable bottom-up knowledge for priority setting and implementing interventions to improve their health-promoting capacities.

Cancer-related mortality among people with intellectual disabilities: A nationwide population-based cohort study.

BACKGROUND: Concerns have been raised about access to cancer screening and the timely receipt of cancer care for people with an intellectual disability (ID). However, knowledge about cancer mortality as a potential consequence of these disparities is still limited. This study, therefore, compared cancer-related mortality patterns between people with and without ID. METHODS: A historical cohort study (2015-2019) linked the Dutch adult population (approximately 12 million people with an ID prevalence of 1.45%) and mortality registries. Cancer-related mortality was identified by the underlying cause of death (according to the chapter on neoplasms in the International Classification of Diseases, Tenth Revision). Observed mortality and calculated age- and sex-standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were reported. RESULTS: There were 11,102 deaths in the ID population (21.7% cancer-related; n = 2408) and 730,405 deaths in the general population (31.2%; n = 228,120) available for analysis. Cancer was noted as the cause of death more often among people with ID in comparison with the general population (SMR, 1.48; 95% CI, 1.42-1.54), particularly in the young age groups. High-mortality cancers included cancers within the national screening program (SMRs, 1.43-1.94), digestive cancers (SMRs, 1.24-2.56), bladder cancer (SMR, 2.07; 95% CI, 1.61-2.54), and cancers of unknown primary (SMR, 2.48; 95% CI, 2.06-2.89). CONCLUSIONS: Cancer was reported as the cause of death approximately 1.5 times more often in people with ID compared with the general population. This mortality disparity may indicate adverse effects from inequalities in screening and cancer care experienced by people with ID. LAY SUMMARY: People with an intellectual disability (ID) may find it challenging to participate in cancer screening or to receive timely cancer care. To understand potential consequences in terms of mortality, this study compared cancer-related mortality between people with and without ID in the Netherlands. Cancer was reported as the cause of death approximately 1.5 times more often among people with ID than others. Because large differences were found that were related to screening cancers and cancers for which the primary tumor was unknown, this study's results raise concerns about equality in screening practices and cancer care for people with ID.

[Oncological treatment of patients with intellectual disability: too limited?] / Oncologische behandeling van patiënten met een verstandelijke beperking.

Genetic factors and lifestyle contribute to specific risks for developing cancer in people with intellectual disabilities. However, early detection and oncological care are less accessible to people with intellectual disabilities than to the general population, contributing to relatively more cancer-related deaths in this population. In order to optimally adapt oncological care to the characteristics and needs of people with intellectual disabilities, regular treatment may need to be adjusted sometimes. Yet, little is known about treatment adjustments in this setting. Scientific articles describing adaptations in oncological care for people with intellectual disabilities often provide no reasons as to why these changes were made. Adequately adapted oncological care for people with intellectual disabilities therefore mainly depends on affinity and experience of individual clinicians. Awareness for abnormal symptoms, genetic factors, and collaboration with other care providers, like the intellectual disability physician is advised.

Linking national public services data to estimate the prevalence of intellectual disabilities in The Netherlands: results from an explorative population-based study.

OBJECTIVES: Individuals with intellectual disabilities (ID) depend on public services for daily support and medical care; however, this group of individuals can be difficult to identify within population data. This therefore limits the opportunities to accurately estimate the size of the population with ID, monitor trends and tailor public health interventions according to the needs and characteristics of this group. By linking relevant databases, this study sought to identify individuals with ID in national data, to estimate the prevalence of ID based on public service use and to explore how this method can be used to better monitor the population with ID. STUDY DESIGN: Explorative data linkage study using the Dutch population register and databases from public services accessible with an ID diagnosis. METHODS: The overall prevalence of ID in the Dutch adult population was estimated, specified by age group and sex, and the identified ID groups were also characterised by their support needs. Participants included the entire adult Dutch population who were alive on 1 January 2015. RESULTS: After linking databases, 187,149 adults with ID were identified within a population of almost 12.7 million Dutch adults, giving an ID prevalence estimate of 1.45%. Prevalence of ID was higher among males (1.7%) than females (1.2%). Most individuals with ID were identified through the use of residential care services (n = 91,064; 0.7%). Non-residential ID-related care was used by 27,007 individuals (0.2%). Social, employment or income support due to a (mild) ID was received by 69,078 individuals (0.5%); the mean age in these ID groups was between 8 and 10 years which is younger than that in the general Dutch population. ID prevalence declined with increasing age across all ID subgroups. CONCLUSIONS: The ID prevalence in The Netherlands, as determined by ID-related public service usage, aligns with international estimates. This suggests that national supportive services are accessible and used by individuals with ID. Moreover, this demonstrated that databases from national supportive services can be a useful resource to identify individuals with ID at the population level and can enable structural monitoring of the ID population through linking national databases.

Patterns in the prevalence of diabetes and incidence of diabetic complications in people with and without an intellectual disability in Dutch primary care: Insights from a population-based data-linkage study.

AIMS: To conduct an epidemiological analysis of patterns observed in diabetes care provided to individuals with and without intellectual disabilities (ID) in primary care settings. METHODS: An ID-cohort (N = 21,203) was compared with a control group of similar age and sex from the general Dutch population (N = 267,628). Distinctive data for diabetes (both type 1 and type 2) and related complications were retrieved from national databases. RESULTS: The prevalence of diabetes was higher in people with ID than in the general population (9.9% versus 6.6%). Largest differences were seen in younger age groups. Women with ID had diabetes more often than men with ID. Complications were less common in people with ID than in the general population (IR 58.6 vs. 70.4). In particular, cardiological complications were noted less, while surgical interventions and hospitalization occurred more often. CONCLUSIONS: Although diabetes was 1.5 times more prevalent in people with ID than in other people, related complications were less common, followed different patterns and were more severe than in the general population. Future research is needed to understand of the underlying causal mechanisms and to lower the risk of severe diabetic complications among people with ID.

The compatibility of reductionistic and complexity approaches in a sociomedical innovation perspective.

Medical technologies, e-health and personalised medicine are rapidly changing the healthcare landscape. Successful implementation depends on interactions between the technology, the actors and the context. More traditional reductionistic approaches aim to understand isolated factors and linear cause-effect relations and have difficulties in addressing inter-relatedness and interaction. Complexity theory offers a myriad of approaches that focus specifically on behaviour and mechanisms that emerge from interactions between involved actors and the environment. These approaches work from the assumption that change does not take place in isolation and that interaction and inter-relatedness are central concepts to study. However, developments are proceeding fast and along different lines. This can easily lead to confusion about differences and usefulness in clinical and healthcare research and practice. Next to this, reductionistic and complexity approaches have their own merits and much is to be gained from using both approaches complementary. To this end, we propose three lines in complexity research related to health innovation and discuss ways in which complexity approaches and reductionistic approaches can act compatibly and thereby strengthen research designs for developing, implementing and evaluating health innovations.

How can care settings for people with intellectual disabilities embed health promotion?

BACKGROUND: People with intellectual disabilities (ID) depend on their environment to live healthily. Asset-based health promotion enhances a settings' health-promoting capacity starting with identifying protective or promotive factors that sustain health. METHOD: This inclusive mixed-methods study used group sessions to generate and rank ideas on assets supporting healthy nutrition and physical activity in Dutch intellectual disability care settings. Participants included people with moderate intellectual disabilities and family and care professionals of people with severe/profound intellectual disabilities. RESULTS: Fifty-one participants identified 185 assets in group sessions. They include the following: (i) the social network and ways "people" can support, (ii) assets in/around "places," and person-environment fit, and (iii) "preconditions": health care, prevention, budget, and policy. CONCLUSION: This inclusive research provides a user perspective on assets in the living environment supporting healthy living. This gives insight in contextual factors needed for development and sustainable embedment of health promotion in the systems of intellectual disability support settings.

Disparities in cancer-related healthcare among people with intellectual disabilities: A population-based cohort study with health insurance claims data.

BACKGROUND: Concerns have been raised about the accessibility and quality of cancer-related care for people with intellectual disabilities (ID). However, there is limited insight into cancer incidence and the utilization of cancer care at the ID population level to inform targeted cancer control strategies. Therefore, we aimed to examine differences in the utilization of cancer-related care between people with and without ID, identified through diagnostic codes on health insurance claims. METHODS: In a population-based cohort study, Dutch individuals of all ages who received residential care through the Chronic Care Act due to an ID (n = 65 183) and an age and sex-matched sample of persons without ID (1:2 ratio), who were cancer-free at enrollment in 2013 were followed through 2015. Incidence rates (IRs) of newly started cancer care and IR ratios (IRRs) with 95% CIs were used to compare groups. Separate analyses were performed per cancer type. RESULTS: Individuals with ID received less cancer-related care than individuals without (IRR = 0.64, 95% CI 0.62-0.66). Differences increased with age and were larger for females than for males. Utilization of care for cancers within the national screening program (female breast, cervical, and colon cancer) was lower for people with ID compared to people without ID. CONCLUSION: Cancer may be underdiagnosed and/or undertreated in people with ID, or cancer is truly less prevalent in this population. In particular, the differences detected between males and females with ID, and the potential underutilization of national screening programs, require urgent follow-up investigations.

Integrating Health Promotion in the Everyday Life of People With Intellectual Disability-The Extent to Which Current Initiatives Take Context Into Account.

Taking the dynamics of everyday life into account is important for health behavior change. Surveys were conducted to gain insight into available health promoting physical activity and nutrition initiatives in the everyday life of people with intellectual disability (ID). Researchers considered characteristics of the initiatives and the attention they give to resources and hindering factors of healthy living for people with ID. The 47 initiatives mostly focused on physical activity and consisted of regularly organized, stand-alone activities. Care professionals, rather than health professionals, were involved. Organizational resources and hindering factors received relatively little attention. Health promotion for people with ID could benefit from incorporating health behavior into routines of daily living, focusing more attention on organizational resources, and improving the collaboration between health professionals and care professionals.

Improving Environmental Capacities for Health Promotion in Support Settings for People with Intellectual Disabilities: Inclusive Design of the DIHASID Tool.

People with intellectual disabilities (ID) have unhealthier lifestyles than the general population. To sustainably improve their lifestyle and health status, a whole-system approach to creating healthy environments is crucial. To gain insight into how support for physical activity and healthy nutrition can be embedded in a setting, asset mapping can be helpful. Asset mapping involves creating a bottom-up overview of promoting and protective factors for health. However, there is no asset mapping tool available for ID support settings. This study aims to develop an asset mapping tool in collaboration with people with ID to gain insight into assets for healthy nutrition and physical activity in such settings. The tool is based on previous research and development continued in an iterative and inclusive process in order to create a clear, comprehensive, and usable tool. Expert interviews (n = 7), interviews with end-users (n = 7), and pilot testing (n = 16) were conducted to refine the tool. Pilot participants perceived the tool as helpful in pinpointing perceived assets and in prompting ideas on how to create inclusive environments with support for physical activity and healthy nutrition. This overview of assets can be helpful for mobilizing assets and building the health-promoting capacities of ID support settings.

A membership categorization analysis of roles, activities and relationships in inclusive research conducted by co-researchers with intellectual disabilities.

BACKGROUND: Inclusive research is studied mainly in short-term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long-term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. METHOD: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. RESULTS: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. CONCLUSIONS: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.

Health problems of people with intellectual disabilities in Dutch out-of-hours primary care.

BACKGROUND: Little is known about the health needs of people with intellectual disabilities who access out-of-hours primary care services, raising concerns about accessibility and quality of care for this group. This study aims to identify commonly presented health problems of people with intellectual disabilities in this specific setting compared with the general population. METHOD: Cross-sectional study with routine data at two out-of-hours cooperatives with a total of 41,166 persons aged 20-65 requesting outof-hours primary care in 2014, of which 315 persons were identified as having an intellectual disability. RESULTS: Having an intellectual disability was associated with a higher probability of presenting with epilepsy (OR 45.65) and concerns about, and adverse effects of, medical treatment (OR 23.37, and 8.41, respectively). CONCLUSIONS: Given the high rates of epilepsy and medication-related concerns of people with intellectual disabilities, this study suggests that these issues require special attention to improve the accessibility and quality of out-of-hours primary care.

Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability.

BACKGROUND: The lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales. METHODS: In an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations. RESULTS: Main adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well. CONCLUSIONS: This study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study's results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID.

An exploration of the participation of people with intellectual disabilities in research-a structured interview survey.

BACKGROUND: Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results. METHOD: Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results. RESULTS: Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information. CONCLUSIONS: Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as "empowerment," can be supported to facilitate their involvement in research.

Does risk and urgency of requested out-of-hours general practitioners care differ for people with intellectual disabilities in residential settings compared with the general population in the Netherlands? A cross-sectional routine data-based study.

OBJECTIVES: To investigate whether people with intellectual disabilities (ID) in residential setting were more likely than people from the general population to request out-of-hours general practitioner (GP) care and whether these requests had a similar level of urgency. DESIGN: Cross-sectional routine data-based study. SETTING: Two GP cooperatives providing out-of-hours primary care in an area in the Netherlands. POPULATION: 432 582 persons living in the out-of-hours service areas, of which 1448 could be identified as having an ID. MAIN OUTCOME MEASURES: GP cooperative records of all contacts in 2014 for people with and without ID were used to calculate the relative risk of requesting care and the associated level of urgency. RESULTS: Of the people with ID (448/1448), 30.9% requested out-of-hours GP care, whereas for the general population this was 18.4% (79 206/431 134), resulting in a relative risk of 1.7 (95% CI 1.6 to 1.8). We found a different distribution of urgency level for people with and without ID. Generally, requests for people with ID were rated as less urgent. CONCLUSION: People with ID in residential setting were more likely to request out-of-hours GP care than the general population. The distribution of the urgency level of requests differed between the two groups. The high percentage of demands relating to people with ID requesting counselling and advice suggests that some out-of-hours GP care may be avoidable. However, more insight is needed into the nature of out-of-hours primary care requests of people with ID to direct structural and reasonable adjustments towards the improvement of health information exchange in and around-the-clock access to primary care for people with ID.