Henny van Schrojenstein Lantman-de Valk

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

Abstract Background POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). Method The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Results Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Conclusions Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

A review of balance and gait capacities in relation to falls in persons with intellectual disability.

Limitations in mobility are common in persons with intellectual disabilities (ID). As balance and gait capacities are key aspects of mobility, the prevalence of balance and gait problems is also expected to be high in this population. The objective of this study was to critically review the available literature on balance and gait characteristics in persons with ID. Furthermore, the consequences of balance and gait problems in relation to falls were studied, as well as the trainability of balance and gait in persons with ID. The systematic literature search identified 48 articles to be included in this review. The literature consistently reports that balance and gait capacities are affected in persons with ID compared to their age-matched peers. These problems start at a young age and remain present during the entire lifespan of persons with ID, with a relatively early occurrence of age-related decline. From these results a conceptual model was suggested in which the development of balance and gait capacities in the ID population across the life span are compared to the general population. Regarding the second objective, our review showed that, although the relationship of balance and gait problems with falls has not yet been thoroughly investigated in persons with ID, there is some preliminary evidence that these aspects are also important in the ID population. Finally, this review demonstrates that balance and gait are potentially trainable in persons with ID. These results suggest that falls might be prevented with ID-specific exercise interventions.

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities

OBJECTIVES To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. STUDY DESIGN AND SETTING Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. RESULTS Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. CONCLUSION To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.

End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. Participants: We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. Results: The core category ‘Deciding for someone else’ describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of ‘Motives’ and ‘Support’ were connected to the core category of ‘Deciding for someone else’. ‘Motives’ refers to the patient representatives’ ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. ‘Support’ refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. Conclusions: From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other’s motives for end-of-decisions and can clarify expectations towards each other.

Active involvement of people with intellectual disabilities in health research - A structured literature review.

Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnsteins ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.

Clinical measures are feasible and sensitive to assess balance and gait capacities in older persons with mild to moderate Intellectual Disabilities

Mobility limitations are common in persons with Intellectual Disabilities (ID). Differences in balance and gait capacities between persons with ID and controls have mainly been demonstrated by instrumented assessments (e.g. posturography and gait analysis), which require sophisticated and expensive equipment such as force plates or a 3D motion analysis system. Most physicians and allied healthcare professionals working with persons with ID do not have such equipment at their disposal, so they must rely on clinical tests to determine whether balance and gait are affected. The aim of this study was to investigate whether existing clinical balance and gait tests are feasible in older persons with mild to moderate ID and to examine whether these tests are able to show limitations in balance and gait capacities in the ID population compared to age-matched peers in the general population. Furthermore, it was aimed to identify the most important determinants of balance and gait disability in persons with the ID. A total of 76 older persons with mild to moderate ID (43 male, mean age 63.1 ± 7.6 years) and 20 healthy controls (14 male, mean age 62.2 ± 5.6 years) participated. Balance and gait abilities were assessed with the Berg Balance Scale (BBS), the Functional Reach test (FR), the Timed Up and Go Test (TUGT), the timed Single Leg Stance (SLS) and the Ten Metre Walking Test (TMWT). Our study showed that it is feasible to conduct standard clinical balance and gait tests in older persons with mild to moderate ID. Balance and gait performance of persons with ID is substantially worse compared to older persons of the general population. Age, number of co-morbidities, Body Mass Index (BMI), body sway and fear of falling are associated with balance and gait performance in persons with ID. These factors might help in the selection of subjects to be monitored on their balance and gait capacities.

Training on intellectual disability in health sciences: the European perspective

Abstract Background: Intellectual disability (ID) has consequences at all stages of life, requires high service provision and leads to high health and societal costs. However, ID is largely disregarded as a health issue by national and international organisations, as are training in ID and in the health aspects of ID at every level of the education system. Specific aim: This paper aims to (1) update the current information about availability of training and education in ID and related health issues in Europe with a particular focus in mental health; and (2) to identify opportunities arising from the initial process of educational harmonization in Europe to include ID contents in health sciences curricula and professional training. Method: We carried out a systematic search of scientific databases and websites, as well as policy and research reports from the European Commission, European Council and WHO. Furthermore, we contacted key international organisations related to health education and/or ID in Europe, as well as other regional institutions. Results: ID modules and contents are minimal in the revised health sciences curricula and publications on ID training in Europe are equally scarce. European countries report few undergraduate and graduate training modules in ID, even in key specialties such as paediatrics. Within the health sector, ID programmes focus mainly on psychiatry and psychology. Conclusion: The poor availability of ID training in health sciences is a matter of concern. However, the current European policy on training provides an opportunity to promote ID in the curricula of programmes at all levels. This strategy should address all professionals working in ID and it should increase the focus on ID relative to other developmental disorders at all stages of life.

Prospective study on risk factors for falling in elderly persons with mild to moderate intellectual disabilities

Elderly persons with intellectual disabilities (ID) are at increased risk for falls and fall-related injuries. Although there has been extensive research on risk factors for falling in the general elderly population, research on this topic in persons with ID is rather sparse. This is the first study to prospective investigate risk factors for falling among elderly persons with mild to moderate ID. Seventy-eight ambulatory persons with mild to moderate ID (mean age 62.8 ± 7.6 years; 44 (56%) men; 34 (44%) mild ID) participated in this study. This longitudinal cohort study involved extensive baseline assessments, followed by a one-year follow-up on fall incidents. Falls occurred in 46% of the participants and the fall rate was 1.00 falls per person per year. The most important risk factors for falling in elderly persons with mild to moderate ID were (mild) severity of ID, (high) physical activity, (good) visuo-motor capacity, (good) attentional focus and (high) hyperactivity-impulsiveness, which together explained 56% of the fall risk. This pattern of risk factors identified suggests a complex interplay of personal and environmental factors in the aetiology of falls in elderly persons with ID. We recommend further research on the development of multifactorial screening procedures and individually tailored interventions to prevent falling in persons with ID.

Falls prevention in persons with intellectual disabilities: Development, implementation, and process evaluation of a tailored multifactorial fall risk assessment and intervention strategy

In the general elderly population, multifactorial screening of fall risks has been shown to be effective. Although persons with intellectual disabilities (ID) fall more often, there appears to be no targeted screening for them. The aim of this study was to develop, implement, and evaluate a falls clinic for persons with ID. Based on guidelines, literature, and expert meetings, a falls clinic for persons with ID was developed. In total, 26 persons with ID and a fall history participated in the study. Process evaluation was conducted with evaluation forms and focus groups. Fifty interventions (0-8 per person) were prescribed. The (para)medical experts, clients, and caregivers described the falls clinic as useful. Advice for improvement included minor changes to clinic content. Logistics were the largest challenge for the falls clinic, for example organizing meetings, completing questionnaires prior to meetings, and ensuring that a personal caregiver accompanied the person with ID. Furthermore, the need for a screening tool to determine whether a person would benefit from the falls clinic was reported. In conclusion, the falls clinic for persons with ID was considered feasible and useful. Some minor content changes are necessary and there is a need for a screening tool. However, logistics concerning the falls clinic need improvement. More attention and time for multifactorial and multidisciplinary treatment of persons with ID is necessary. Implementation on a larger scale would also make it possible to investigate the effectiveness of the falls clinic with regard to the prevention of falls in this population.

Health Inequity in People with Intellectual Disabilities: From Evidence to Action Applying an Appreciative Inquiry Approach

BACKGROUND The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops. MATERIALS AND METHODS The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach. RESULTS A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how and visibility and a pervasive theme, that of person-centered support. CONCLUSION Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required.