Background Rapid spread of coronavirus disease 2019 (COVID-19) has affected people with intellectual disability disproportionately. Existing data does not provide enough information to understand factors associated with increased deaths in those with intellectual disability. Establishing who is at high risk is important in developing prevention strategies, given risk factors or comorbidities in people with intellectual disability may be different to those in the general population. Aims To identify comorbidities, demographic and clinical factors of those individuals with intellectual disability who have died from COVID-19. Method An observational descriptive case series looking at deaths because of COVID-19 in people with intellectual disability was conducted. Along with established risk factors observed in the general population, possible specific risk factors and comorbidities in people with intellectual disability for deaths related to COVID-19 were examined. Comparisons between mild and moderate-to-profound intellectual disability subcohorts were undertaken. Results Data on 66 deaths in individuals with intellectual disability were analysed. This group was younger (mean age 64 years) compared with the age of death in the general population because of COVID-19. High rates of moderate-to-profound intellectual disability (n = 43), epilepsy (n = 29), mental illness (n = 29), dysphagia (n = 23), Down syndrome (n = 20) and dementia (n = 15) were observed. Conclusions This is the first study exploring associations between possible risk factors and comorbidities found in COVID-19 deaths in people with intellectual disability. Our data provides insight into possible factors for deaths in people with intellectual disability. Some of the factors varied between the mild and moderate-to-profound intellectual disability groups. This highlights an urgent need for further systemic inquiry and study of the possible cumulative impact of these factors and comorbidities given the possibility of COVID-19 resurgence.
Disparities in the health status and care experienced by people with intellectual disabilities are increasingly being recognized. This special report presents the results of an international expert consensus workshop held under the auspices of the Health Issues Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities. The workshop's presentations were designed to identify domains of health disparity and identify examples of evidence‐based or good practice and from them define statements and recommendations that would form the basis of an agenda for change. The report recognizes the breadth of domains that impact on disparity in health among people with intellectual disabilities by highlighting the importance of classification and the direct recognition of the increased morbidity and reduced life expectancy that these people experience. The report also considers population‐based causes of disparity relating to social circumstances and inequalities in the provision of health and social services. Individual predispositions attributable to sex or genetic factors and potential solutions actualized through self‐determination are discussed.
Background Epilepsy has a pervasive impact on the lives of people with intellectual disability and their carers. The delivery of high-quality care is impacted on by the complexity and diversity of epilepsy in this population. This article presents the results of a consensus clinical guideline process. Results A Delphi process identified a list of priority areas for the development of evidence-based guidelines. All guidelines were graded and consensus on scoring was achieved across the guideline group. Conclusion There is a dearth of high-quality evidence from well-constructed studies on which to
The aim of this study was to determine whether intranasal midazolam is a safe and effective rescue medication in adolescent and adult patients with severe epilepsy. This field trial was designed to test the feasibility of the use of intranasal midazolam as an alternative to rectal diazepam in a cohort of patients with severe epilepsy who require rescue medication as part of their treatment. A dose of intranasal midazolam (5 mg if the patient weighed less than 50 kg and 10 mg if the patient weighed over 50 kilograms) was prescribed for those who had previously responded to other rescue medication. Midazolam was prescribed buccally if excessive head movement accompanied seizures. The protocol reverted to the usual rescue medication if there was no response to midazolam within 10 minutes. Vital signs were monitored for half an hour following the administration of the treatment. Twenty-two patients received 84 treatment episodes and 79 of these were considered clinically effective. Five treatment failures were recorded, three due to poor technique in delivering the midazolam. Two patients were successfully retried on midazolam and a third is awaiting a retrial of this drug. The two other treatment failures received the drug buccally. In the first patient the clinical opinion was that this was possibly a psychogenic non-epileptic seizure. The other patient responded initially, but within an hour had another seizure requiring further rescue treatment. No significant adverse effects were reported. Our study shows that intranasal midazolam, when used appropriately, is an effective treatment in those who require rescue treatment. There are clear advantages in the use of midazolam over diazepam in the treatment of acute seizures. These include the favourable pharmacokinetic and pharmacodynamic properties of midazolam as well as the potential of a more acceptable and dignified administration route.
Advancing knowledge of the existence of Helicobacter pylori and its association with gastrointestinal tract malignancy, and previous research showing higher-than-expected gastrointestinal tract malignancy in institutionalized adults with intellectual disability (ID) prompted a review of all deaths as a result of cancer in the Stoke Park group of hospitals for people with ID between 1946 and 1996. A 50-year, retrospective case note analysis of all deaths from cancer in an institution for people with ID was undertaken. Death from stomach cancer accounted for up to 48% of all cancer deaths. A further 25 residents had died of perforated stomach ulcers. The higher proportion of deaths specifically caused by stomach cancer in a population with ID has not been noted previously. It is postulated that the high levels of H. pylori infection found in institutionalized populations may be instrumental in this higher mortality rate and that the closure of the institutions without evaluation of H. pylori status transfers the problem unresolved to the community. Existing guidelines for the screening and eradication of H. pylori developed for the general population are inadequate when applied to people with ID, and therefore, the value of population screening and mass eradication programmes is explored.
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