Explore the vast range of titles available.

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.

Background People with intellectual disability have a poorer health status than the general population. In The Netherlands, support workers play a key role in meeting health support needs of people with intellectual disability. Research on how people with intellectual disability and their support workers experience the support worker’s role in preventing, identifying, and following up health needs of people with intellectual disability is scarce. To enhance health support of people with intellectual disability it is crucial that we understand how health support is delivered in everyday practice. Therefore, this study investigated experiences of people with intellectual disability and support workers with the health support of people with intellectual disability. Method Data collection consisted of six focus group (FG) discussions with between four and six participants ( N  = 27). The FGs consisted of three groups with support workers ( n  = 15), two groups with participants with mild to moderate intellectual disability ( n  = 8), and one group with family members as proxy informants who represented their relative with severe to profound intellectual disability ( n  = 4). The data was analysed thematically on aspects relating to health support. Results We identified three main themes relevant to the health support of people with intellectual disability: 1) dependence on health support, 2) communication practices in health support, and 3) organizational context of health support. Dependence on health support adresses the way in which support workers meet a need that people with intellectual disability cannot meet themselves, and communication practices and organizational context are identified as systems in which health support takes place. Conclusion This study investigated experiences with the health support of people with intellectual disability from the perspectives of people with intellectual disability and support workers. We discuss the dependence of people with intellectual disability and the complexity of health support in everyday practice. We provide practical implications that can strengthen support workers in the provision of health support for people with intellectual disability in everyday practice. The findings of this study emphasize the need for intellectual disability care-provider organizations to establish policies around consistency in support staff to make it easier to identify and follow up health needs, and an environment where support staff can develop their expertise concerning communication practices, lifestyle choices, and identifying and following up health needs.

ObjectivePeople with intellectual disabilities (ID) face notable health disparities, also affecting cancer care. This study is among the first to use nationwide population and cancer registry databases to compare cancer incidence in the population with ID and the general population.Methods and analysisA population-based cohort study enrolled all Dutch adults (18+) with indicators of ID (N=187 149) and a 1:4 random general population sample without ID (N=760 907). All cancer diagnoses from 1 January 2015 until 31 December 2020 were collected from the national cancer registry to compare incidence and diagnostic details.ResultsOverall, fewer incident cancer cases were found among individuals with ID than without ID (51.0 vs 104.1/10 000 person-years; adjusted OR (adj.OR) 0.79 (0.76–0.81)), with cases occurring at younger ages and being diagnosed more often at a more advanced stage than in the general population. Key distinctions from the general population include reduced odds of skin cancer (adj.OR 0.39 (0.36–0.43)) and elevated odds of cancer of unknown primary (OR 1.60 (1.29–1.98)). The fewest cancer diagnoses occurred among those entitled to long-term ID care (adj.OR 0.63 (0.60–0.66)), with those living independently being at greater risk for cancers of digestive, respiratory and female genital organs.ConclusionAlthough the overall incidence of cancer in the population with ID appears lower than in the general population, significant variations exist across ID subgroups and cancer types. These differences indicate varying exposures, lower cancer awareness and barriers to healthcare for individuals with ID. Addressing these differences requires customised strategies for public health, long-term care and oncology care.

Background People with intellectual disabilities (ID) face barriers in cancer care contributing to poorer oncological outcomes. Yet, understanding cancer risks in the ID population remains incomplete. Aim To provide an overview of cancer incidence and cancer risk assessments in the entire ID population as well as within ID‐related disorders. Methods This systematic review examined cancer risk in the entire ID population and ID‐related disorders. We systematically searched PubMed (MEDLINE) and EMBASE for literature from January 1, 2000 to July 15, 2022 using a search strategy combining terms related to cancer, incidence, and ID. Results We found 55 articles assessing cancer risks in the ID population at large groups or in subgroups with ID‐related syndromes, indicating that overall cancer risk in the ID population is lower or comparable with that of the general population, while specific disorders (e.g., Down's syndrome) and certain genetic mutations may elevate the risk for particular cancers. Discussion The heterogeneity within the ID population challenges precise cancer risk assessment at the population level. Nonetheless, within certain subgroups, such as individuals with specific ID‐related disorders or certain genetic mutations, a more distinct pattern of varying cancer risks compared to the general population becomes apparent. Conclusion More awareness, and personalized approach in cancer screening within the ID population is necessary.

The use of eHealth is more challenging for people with intellectual disabilities (IDs) than for the general population because the technologies often do not fit the complex needs and living circumstances of people with IDs. A translational gap exists between the developed technology and users' needs and capabilities. User involvement approaches have been developed to overcome this mismatch during the design, development, and implementation processes of the technology. The effectiveness and use of eHealth have received much scholarly attention, but little is known about user involvement approaches. In this scoping review, we aimed to identify the inclusive approaches currently used for the design, development, and implementation of eHealth for people with IDs. We reviewed how and in what phases people with IDs and other stakeholders were included in these processes. We used 9 domains identified from the Centre for eHealth Research and Disease management road map and the Nonadoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability framework to gain insight into these processes. We identified both scientific and gray literature through systematic searches in PubMed, Embase, PsycINFO, CINAHL, Cochrane, Web of Science, Google Scholar, and (websites of) relevant intermediate (health care) organizations. We included studies published since 1995 that showed the design, development, or implementation processes of eHealth for people with IDs. Data were analyzed along 9 domains: participatory development, iterative process, value specification, value proposition, technological development and design, organization, external context, implementation, and evaluation. The search strategy resulted in 10,639 studies, of which 17 (0.16%) met the inclusion criteria. Various approaches were used to guide user involvement (eg, human or user-centered design and participatory development), most of which applied an iterative process mainly during technological development. The involvement of stakeholders other than end users was described in less detail. The literature focused on the application of eHealth at an individual level and did not consider the organizational context. Inclusive approaches in the design and development phases were well described; however, the implementation phase remained underexposed. The participatory development, iterative process, and technological development and design domains showed inclusive approaches applied at the start of and during the development, whereas only a few approaches involved end users and iterative processes at the end of the process and during implementation. The literature focused primarily on the individual use of the technology, and the external, organizational, and financial contextual preconditions received less attention. However, members of this target group rely on their (social) environment for care and support. More attention is needed for these underrepresented domains, and key stakeholders should be included further on in the process to reduce the translational gap that exists between the developed technologies and user needs, capabilities, and context.

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.

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.

Background Recruitment challenges, the use of complex language, and reluctance toward research are factors that make people with low literacy skills (LL skills), such as people with mild intellectual disability (MID), an underrepresented group in public health monitoring questionnaires. As a result, little is known about the health status and needs of people with MID and/or LL skills, despite their higher health risks and greater support needs, reinforcing health inequalities. Therefore, this case study evaluates the development and implementation of an accessible online COVID-19 health monitoring survey (CHM) to gain insights into what is needed to engage these subpopulations in public health monitoring and promote equitable participation. Methods The CHM project was systematically analyzed using 319 documents related to the CHM development and implementation process. A semi-structured coding approach was used to identify strategies used to reach the target groups and elements influencing accessibility of the monitoring survey. Results Three key strategies to reach people with MID and/or LL skills were identified: stakeholder involvement, emphasizing the benefits of participation, and reducing barriers and reluctance to participate. Additionally, the inclusive development process played an essential role in improving accessibility and led to content, cognitive, and usability adjustments. Conclusions Our study illustrates that engaging people with MID and/or LL skills in public health monitoring relies on committed stakeholders who facilitate access to these groups and the involvement of experts by experience and co-researchers to align the monitoring survey with their experiences and abilities. These tailored methods and innovative recruitment strategies offer an opportunity for accessible and representative public health monitoring. Sustaining such monitoring approach could inform health policies that better reflect the needs of underrepresented groups and promote health equity.

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.

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. Individuals with an intellectual disability (ID) were given less cancer‐related health care than people without ID. This could indicate cancer is under‐diagnosed and/or under‐treated in people with ID.