Parents' perspectives on provided health care for adults with Down syndrome: A qualitative interview study.

BACKGROUND: A comprehensive multidisciplinary medical guideline for adults with Down syndrome is lacking in the Netherlands. In this study, we aim to explore parents' views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline. METHOD: This qualitative study used semi-structured interviews. Nineteen interviews were conducted with parents of adults with Down syndrome. The main themes and subthemes were identified from the transcripts by using the framework method. RESULTS: Four main themes were identified which should be addressed in the guideline according to the parents: parents' support in medical care, patient-centred care, important medical topics and the organisation of medical care. CONCLUSIONS: This study provides insights into parents' opinions about medical care for adults with Down syndrome. These insights are used in the construction of a guideline to improve medical care for adults with Down syndrome.

All-cause and cause-specific mortality among people with and without intellectual disabilities during the COVID-19 pandemic in the Netherlands: a population-based cohort study.

BACKGROUND: Although high rates of COVID-19-related deaths have been reported for people with intellectual disabilities during the first 2 years of the pandemic, it is unknown to what extent the pandemic has impacted existing mortality disparities for people with intellectual disabilities. In this study, we linked a Dutch population-based cohort that contained information about intellectual disability statuses with the national mortality registry to analyse both cause-specific and all-cause mortality in people with and without intellectual disabilities, and to make comparisons with pre-pandemic mortality patterns. METHODS: This population-based cohort study used a pre-existing cohort that included the entire Dutch adult population (everyone aged ≥18 years) on Jan 1, 2015, and identified people with presumed intellectual disabilities through data linkage. For all individuals within the cohort who died up to and including Dec 31, 2021, mortality data were obtained from the Dutch mortality register. Therefore, for each individual in the cohort, information was available about demographics (sex and date of birth), indicators of intellectual disability, if any, based on chronic care and (social) services use, and in case of death, the date and underlying cause of death. We compared the first 2 years of the COVID-19 pandemic (2020 and 2021) with the pre-pandemic period (2015-19). The primary outcomes in this study were all-cause and cause-specific mortality. We calculated rates of death and generated hazard ratios (HRs) using Cox regression analysis. FINDINGS: At the start of follow-up in 2015, 187 149 Dutch adults with indicators of intellectual disability were enrolled and 12·6 million adults from the general population were included. Mortality from COVID-19 was significantly higher in the population with intellectual disabilities than in the general population (HR 4·92, 95% CI 4·58-5·29), with a particularly large disparity at younger ages that declined with increasing age. The overall mortality disparity during the COVID-19 pandemic (HR 3·38, 95% CI 3·29-3·47) was wider than before the pandemic (3·23, 3·17-3·29). For five disease groups (neoplasms; mental, behavioural, and nervous system; circulatory system; external causes; and other natural causes) higher mortality rates were observed in the population with intellectual disabilities during the pandemic than before the pandemic, and the pre-pandemic to during the pandemic difference in mortality rates was greater in the population with intellectual disabilities than in the general population, although relative mortality risks for most other causes remained within similar ranges compared with pre-pandemic years. INTERPRETATION: The impact of the COVID-19 pandemic on people with intellectual disabilities has been greater than reflected by COVID-19-related deaths alone. Not only was the mortality risk from COVID-19 higher in people with intellectual disabilities than in the general population, but overall mortality disparities were also further exacerbated during the first 2 years of the pandemic. For disability-inclusive future pandemic preparedness this excess mortality risk for people with intellectual disabilities should be addressed. FUNDING: Dutch Ministry of Health, Welfare, and Sport and Netherlands Organization for Health Research and Development.

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.

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.

"Constructing a health assessment questionnaire for people with intellectual disabilities: A cognitive interview study".

INTRODUCTION: Health assessment instruments can help to raise awareness among general practitioners of specific health problems in people with intellectual disabilities (PID). The present authors developed a health assessment questionnaire using the cognitive interview technique (CI) to improve the comprehensibility. The utility of this approach to questionnaire development involving PID is assessed. METHOD: A qualitative approach using the CI was employed. The study included PID and their caregivers. The present authors interviewed 14 participants in 5 subsequent rounds. After each round, the questionnaire was adjusted until saturation was reached. RESULTS: Three hundred and sixty three identified problems led to 316 changes to the questionnaire. Most problems (102) concerned the comprehension of the question, followed by problems in the "missing answer categories" and "inaccurate instruction" section. CONCLUSION: The comprehensible health assessment questionnaire can help PID to take an active role in communication with their GP. The use of CI helped to improve the questionnaire. CI is a usable and valuable procedure for PID.

Development of a health assessment instrument for people with intellectual disabilities: a Delphi study.

Background: People with intellectual disabilities (IDs) experience health inequalities. Applying health assessments is one way of diminishing these inequalities. A health assessment instrument can support general practitioners (GPs) in providing better medical care to people with ID. Objectives: The aim of this study was to determine which items should be part of a health assessment instrument for people with ID to be used in primary care. Methods: This Delphi consensus study was conducted among 24 GP experts and 21 ID physicians. We performed three anonymous sequential online questionnaire rounds. We started with 82 'general' items and 14 items concerning physical and additional examinations derived from the international literature and a focus group study among Dutch GPs. We definitely included items if more than 75% of the GP experts agreed on their inclusion. Results: The participation rate in all rounds was above 88%. The expert groups proposed 10 new items. Consensus was reached on 64 'general' items related to highly prevalent diseases, public health and health promotion. Consensus was also reached on 18 physical and additional examination items. Conclusions: For the first time, experts in a Delphi study were able to arrive at a selection of items for a health assessment instrument for people with ID. The overall agreement among the GPs and ID physicians was good. Because the experts prefer that patients complete the health assessment questionnaire at home, questions that cover these items must be formulated clearly.

GPs' opinions of health assessment instruments for people with intellectual disabilities: a qualitative study.

BACKGROUND: GPs provide health care to people with intellectual disabilities (ID). People with ID find it difficult to express themselves concerning health-related matters. Applying health assessments is an effective method to reveal health needs, and can play a role in prevention and health promotion. AIM: The aim of this qualitative study was to explore GPs' considerations about applying a health assessment for people with ID. DESIGN AND SETTING: This focus group study was conducted among a selection of Dutch GPs. METHOD: An interview guide was developed. All discussions were audiorecorded and transcribed. Analysis was performed using the framework analysis approach. Two researchers independently applied open coding and identified a thematic framework. This framework and the summaries of views per theme were discussed in the research team. RESULTS: After four focus groups, with 23 GPs, saturation was reached. Three main themes evolved: health assessments in relation to GPs' responsibility; the usefulness and necessity of health assessments; and barriers to using health assessments on people with ID. A health assessment instrument for people with ID can help GPs to focus on certain issues that are not so common in the general population. GPs are motivated to use such a tool if it is scientifically tested, and results in significant health gains. However, GPs identify barriers at the level of GP, patient, and organisation. CONCLUSION: Most GPs in the focus groups consider providing medical care to people with ID their responsibility and indicate that a health assessment instrument could be a valuable tool. In order to deliver good care, they need education and support. Many barriers need to be overcome before a health assessment instrument can be implemented.

[Psychotropic drug prescription to people with intellectual disability in GP practices]. / Psychofarmaca voor mensen met een verstandelijke beperking in de eerste lijn.

Antipsychotic drugs are more often prescribed in primary care to people with intellectual disability (ID) with challenging behaviour, sometimes even without a diagnosis, than to those with a diagnosed mental illness. This is shown in a large cohort study in the United Kingdom in primary care and in a Dutch study in three residential care facilities. This prescription behaviour is undesirable. There is no evidence for the effectiveness of off-label prescription. Antipsychotic drugs can cause (serious) side effects. Active monitoring for these side effects is required as people with ID seldom complain. Challenging behaviour can be provoked by somatic illnesses. The Dutch study showed that antipsychotic drug reduction in people with ID with challenging behaviour led to improved behaviour and improvement of physical parameters. A skilled multidisciplinary team of professionals can help with alternative management strategies for challenging behaviour. These teams should be made available for primary care services.

[Take the time: primary healthcare for people with intellectual disabilities]. / Neem de tijd: zorg voor mensen met verstandelijke beperkingen in de eerste lijn.

People with intellectual disabilities (ID) have a higher prevalence of health problems than the general population and their health needs are often unrecognized and unmet. In this article we present three cases of patients with ID to illustrate some specific problems. A 22-year-old man, severely intellectually disabled, presented with an unsteady gait. He had recently been diagnosed with Cohen Syndrome. Since he was unable to express himself, it took some time to discover that he had additional symptoms, e.g. frequent infections. Eventually, all his complaints fit with his syndrome. A 54-year-old woman, severely to moderately intellectually disabled, presented with new behaviour, i.e. loss of appetite, weakness in her legs and excessive thirst. Although she was able to speak, she was unable to explain what was wrong with her. Since we were aware of the etiology of her disability, Prader Willi syndrome, we were more aware of the possibility of diabetes mellitus. A 56-year-old man, mildly intellectually disabled, presented with hearing voices for which he received antipsychotic medication. After a conversation in simple language, we discovered that he heard humming sounds rather than voices. He was ultimately diagnosed with tinnitus rather than psychosis. It takes time to discover the health issues that affect patients with ID. This is due to communication problems, the inability to understand bodily functions, symptoms and diseases, multi-morbidity, the atypical presentation of disease at times and the different prevalence rates for certain diseases when compared with the general population.