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Background: Type 2 diabetes mellitus, cardiovascular disease and chronic obstructive pulmonary disease contribute significantly to societal and individual impact globally. High‐quality management of these long‐term health conditions is important to prevent deterioration of health, although potentially more complex for patients with intellectual disabilities in residential care. Disease management in this context particularly benefits from complete and accurate recording of disease management. Without complete records, long‐term health conditions are more difficult to track due to the level of uncertainty regarding which clinical examinations have and have not been performed. This study therefore aims to examine the recording routines of quality indicators for disease monitoring for chronically ill patients with intellectual disabilities in Dutch residential care. Methods: This retrospective study utilised medical record data from a large Dutch long‐term care provider. We assessed the occurrence of cardiovascular disease (ICPC‐2 codes K74, K75, K76, K89 and K90), type 2 diabetes mellitus (T90, T90.02) and/or COPD (R91, R95). For adults with intellectual disabilities and long‐term condition, we analysed data entries in an 18‐month period (between July 2020 and December 2021). Observed consultation rates were calculated and presented in median with interquartile range and contrasted against the baseline number of consultations in primary care. Information on recorded quality indicators was presented in frequencies and percentages. Findings: Of the three long‐term conditions investigated, the most common was type 2 diabetes mellitus (8.6%; n = 287), followed by cardiovascular disease (5.8%; n = 195) and COPD (3.0%; n = 101). Of those who received management for their long‐term condition from their contracted GP, patients with type 2 diabetes mellitus, cardiovascular disease, or COPD had fewer consultations in 2021 than the Dutch baseline. Discussion of lifestyle was often not recorded. Disease monitoring quality indicators were recorded more often but at a lower frequency than expected. Conclusions: Because of the infrequent recording of quality indicators, recording of management of long‐term conditions for patients with intellectual disabilities in long‐term care appears suboptimal. Although this may not directly harm individual patients, it may jeopardise the quality of management of long‐term conditions, as suboptimal recording limits opportunities for evaluation and improvement. Within a broader trend towards data‐driven work methods in healthcare, recording of quality indicators requires attention from practice, research and policy. We should watch over long‐term diseases to help people stay healthy. We run tests, like checking blood pressure. The results are written in their medical records. These tests are like quality checks.We wanted to see if and how these quality checks were used, mostly for people with a learning disability living in care homes who also have heart disease, diabetes, or lung problems.We looked at their medical papers to see if these checks were there. We also looked at how often they saw the doctor.We found that chronically ill people with a learning disability went to the doctor quite often. But not as often as we expected. Also, the checks were not always written down. The talks about their lifestyle with the doctors were not noted very often.This can impact how well doctors care for the health issues of people with learning disability. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Primary care providers require accurate evidence on chronic disease prevalence in people with intellectual disabilities in order to apply this information into practice. This study aimed to map the broadness of literature on chronic disease prevalence in people with and without intellectual disabilities, and to explore main characteristics of these studies. Method: A scoping review of peer‐reviewed literature was conducted, covering 2000 to February 2020, including literature that discussed chronic disease prevalence in people with and without intellectual disabilities, with similar data collection method for both groups. Results: Nineteen studies were included. Chronic disease prevalence varied considerably between people with and without intellectual disabilities. Studies differed in their methodologies, country and age groups that were enrolled. Conclusions: Primary care providers should interpret results on disease prevalence among people with intellectual disabilities in light of the study characteristics. Researchers should always interpret prevalence rates in the context of methodology. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]