Publications (13)24.76 Total impact
- [Show abstract] [Hide abstract] ABSTRACT: Background: People with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD. Method: MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted 'risk of bias tool' for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available. Results: In total, 20 studies were included and analysed. In the meta-analysis, a homogeneous prevalence rate of 70% (CI 65-75%) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity. Conclusion: This review provides an overview of the current state of the art research on the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD.
- [Show abstract] [Hide abstract] ABSTRACT: Background: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans. Method: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded. Results: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux. Conclusions: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.
- [Show abstract] [Hide abstract] ABSTRACT: Little is known about the involvement of nurses in the process of making end-of-life decisions for people with intellectual disability (ID). The aim of this study was to clarify this process from the perspective of nurses. This qualitative study involved nine semistructured interviews with nurses working in chronic care, conducted after the deaths of patients with ID in the Netherlands. The interviews were transcribed verbatim and analyzed using Grounded Theory procedures. The core characteristic of the position of the nurses and of the way they supported the patient was “Being at the center of communication.” Related categories of topics emerging from the interviews were “Having a complete picture of the patient,” “Balancing involvement and distance,” “Confidence in one's own opinion,” and “Knowledge about one's own responsibility,” all of which were focused on the patient. This focus on the patient with ID might explain why the nurses could make valuable contributions to such an important subject as end-of-life decisions. People with ID themselves were not involved in the decisions. The nurses were not always aware who was ultimately responsible for the end-of-life decisions. Nurses are in a unique position to support the process of end-of-life decision-making. It is important to use their knowledge and give them a more prominent position in this decision-making process. It should be clear to all involved who is ultimately responsible for making the end-of-life decisions.
- [Show abstract] [Hide abstract] ABSTRACT: Behavioural problems are frequently reported in residential care for people with an intellectual disability (ID) in particular when they are additionally diagnosed with autism spectrum disorder (ASD). There are indications that impairment in cognitive shifting may be associated with problem behaviour. The objectives of this study were (1) to examine the relationship of cognitive shifting and severity of ASD symptoms with externalising problem behaviour in individuals with ID, with and without ASD, and (2) to examine whether a diagnosis based on shifting impairment is more predictive of externalising problem behaviour than an ASD diagnosis. Participants consisted of adolescents and young adults with mild ID, with and without ASD (n = 41). Pearson intercorrelations were computed to explore the relationship between shifting impairment and severity of ASD symptoms on the one hand and ratings of externalising problem behaviour on the other hand. t-Tests were performed to analyse differences in externalising problem behaviour. Unlike ASD symptom severity, shifting scores were found to be associated with externalising problem behaviour, but only if shifting was measured using rating scales and not when using neuropsychological tasks. Externalising problem behaviour scores significantly differed when groups were classified according to shifting impairment (impaired vs. non-impaired) but not when they were classified according to ID and ASD diagnoses. It is proposed to use a cognition-based approach when analysing problem behaviour, thus concentrating not so much on ID and ASD diagnosis and their corresponding symptoms, but rather placing the focus on cognitive symptoms. © 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
- [Show abstract] [Hide abstract] ABSTRACT: Aggressive behaviour is a major problem in individuals with an intellectual disability (ID) as well as in individuals with an Autism Spectrum Disorder (ASD). There are indications that suggest a link between cognitive shifting and aggression. In this study, reports of aggressive incidents of adolescents and young adults with different clinical diagnoses (ID, ID + ASD, ASD) were collected during 1 year, using the Staff Observation Aggression Scale-Revised. Whether they were diagnosed with ID, ASD or both; individuals who displayed aggression were found to face more cognitive shifting difficulties than non-aggressive individuals, while no significant differences were found on severity of ASD symptoms. Study results support the assumption that a cognition-based model for aggression may be more adequate than a diagnose-based model.
- [Show abstract] [Hide abstract] ABSTRACT: Executive functioning (EF) is important for adequate behavioural functioning and crucial for explaining symptoms of autism spectrum disorders (ASD) in individuals with normal intelligence, but is scarcely studied in individuals with ASD and intellectual disabilities (ID). We therefore study EF in an ID population by comparing performances on three frequently studied executive functions (shifting, inhibition and updating) between individuals with ASD and individuals without ASD. When studying ID populations, one should be aware of Spearman's Law of Diminishing Returns (SLODR), as it questions the possibility of measuring separate cognitive functions in ID populations. Six EF tasks were administered to 50 individuals with mild to borderline ID, of which half was diagnosed with ASD. In order to investigate the distinctness of the three executive functions in this ID sample, the results on the six EF tasks were subjected to principal components analysis (PCA). Subsequently, a multivariate analysis of variance (MANOVA) was performed to assess differences between the ASD and non-ASD group on shifting, inhibition and updating. The PCA revealed the hypothesised EF trichotomy. MANOVA analysis showed no significant group differences on EF-performance. Three separate executive functions were measured in this ID population, but despite much evidence that individuals with ASD display more behavioural problems and the proven relevance of EF in behavioural functioning, no significant group difference was found on shifting, inhibition or updating. After this first effort to achieve more insight into EF of individuals with ASD and ID the relation between behavioural problems and EF will require further study.
- [Show abstract] [Hide abstract] ABSTRACT: Worldwide, contraception is frequently used by women for the prevention of conception, to regulate or postpone menstrual bleeding. The study aims to determine the use (number and method) of contraception by women with intellectual disabilities (ID), the indications, sources of referrals and relations with level of ID and age of the women concerned. The study group consisted of 234 women aged between 15 and 59 years and residing at a Dutch service provider for persons with ID. Data were obtained via the pharmacy database, attending physicians and individual medical files. Nearly one half (48%, n = 112) of the 234 residential women used some method of contraception: 87 (78%) took pharmacological contraceptive methods, 23 (20%) underwent surgical contraception and 2 (2%) both. Main reasons for contraception were problems with menstruation, behaviour and/or prevention of pregnancy. Requests for contraception were initiated mainly by physicians and parents. Differences between users of different contraceptives with regard to age and level of ID were not statistically significant. Further studies should focus on the development and implementation of adequate health promotion materials on this subject.
- [Show abstract] [Hide abstract] ABSTRACT: Background Evidence suggests that people with intellectual disabilities experience secondary health conditions and report inequities in health status and access to health systems. Reliable information is essential to identify health disparities. A review of health interview and health examination surveys conducted in 17 European countries was undertaken to determine whether people with intellectual disabilities were represented. Method Using the online HIS HES database, 123 health surveys were scrutinized to determine whether they contained questions relevant to the Pomona 18 indicator set, and whether data could be extracted specifically on behalf of respondents with intellectual disabilities. Results Findings reveal that while items relating to 16 of the Pomona 18 health indicators were found in 123 of the surveys scrutinized, only nine surveys were identified as having potential to extract data on respondents with intellectual disabilities. Conclusion These findings have implications for those charged with the collection of comparable information about population health.
- [Show abstract] [Hide abstract] ABSTRACT: Since the 1990s, people with intellectual disability (ID) in the Netherlands have been moving from institutions to supported accommodation in the community. The Government is in need of recent data on the numbers of these people, to ensure adequate care provision and funding. This paper reports on the prevalence of people with ID in the Netherlands. The research question was: what is the lowest and highest estimation of prevalence of people with ID in the Netherlands? Two extrapolation methods were used, each consisting of a number of stages, using general practice databases and ID care services records. The prevalence of people with ID in the Netherlands was 0.7% (111,750 persons). Other assumptions yielded 0.54-0.64%. Arguments for the two extrapolation methods and the lowest and highest estimation of prevalence are discussed. Compared with 1988, there has been a slight decrease in the prevalence of people with ID in the Netherlands, even though we included all age groups and even people with ID of who were not included in ID care services records. By using general practitioner databases it was possible to identify these not registered people with ID.
- [Show abstract] [Hide abstract] ABSTRACT: Current changes in care philosophy and diversity in care arrangements caused the need for a new estimate of the number of people with intellectual disability (ID), based on recent data. Previous estimates were based on client registrations, which was thought unreliable at this time. This manuscript studies the question how many people with ID can be found in (part of) the Netherlands. Identification of people with ID through a combination of general practice (GP) data bases and service registrations in the province of Limburg. The prevalence of people with ID appeared to be between 0.64% and 0.70%. About 0.21-0.27% were living with family or on their own; 55% of them did not use common ID services. Results are based on a combination of identification methods. Thirteen per cent of uncertain cases led to minimum and maximum estimates of the population. Limitations of the method and alternative ways of data collection are discussed.
- [Show abstract] [Hide abstract] ABSTRACT: Abstract The European Commission's Health Monitoring Programme culminated in the development of a set of European Community Health Indicators (ECHI) for the general population. Despite evidence of marked disparities between the health of people with intellectual disabilities (ID) and their peers in the general population, the ECHI contain no significant reference to people with ID. To address this deficit, a two-year grant from the Health Monitoring Programme was awarded to the Pomona project (a collection of researchers from 13 European countries). The project comprised exchanges of expertise; a critical review of published evidence about health and ID; and consultative processes in member states. The project's finding was that there was no systematic monitoring of the health of people with ID in EU member states and, as a consequence, a set of health indicators specific to people with ID was proposed that could lead to such systemic monitoring.
- [Show abstract] [Hide abstract] ABSTRACT: Abstract Reported here are the preliminary results of the second Dutch National Survey of General Practice in which data were collected on all contacts with general practitioners (GPs) during a 12-month period to determine characteristics of patients with intellectual disabilities (ID). Sociodemographic characteristics differed significantly between people with ID and controls, indicating significant differences in morbidity between the two groups (people with ID were found to have more psychological problems, more digestive problems, more ear problems, more neurological problems, and more general and unspecified problems).
- [Show abstract] [Hide abstract] ABSTRACT: People with intellectual disabilities make up about 1% of the population of Europe. As trends toward community life advance, they have become more visible and more likely to access generic health systems. Yet evidence suggests that there are striking disparities between the health of this group and that of the general population. Increased longevity means that adults in this group expect to live longer lives and thus to encounter age-related risks for various health conditions. The 'Pomona' project, funded by the EU Health Monitoring Unit, aims to develop a set of health indicators for people with intellectual disabilities. It will build on the work accomplished by the team developing ECHI--European Community Health Indicators. This article outlines the rationale for the project, key elements in its implementation and expected outcomes.
Radboud University NijmegenNymegen, Gelderland, Netherlands
Maastricht, Provincie Limburg, Netherlands
- Department of General Practice
University College Dublin
Dublin, Leinster, Ireland
- Centre for Disability Studies