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In adults with Down syndrome, the combination of low physical activity and fitness levels and the high prevalence of musculoskeletal co-morbidities stresses the need for specialized exercise programs. The goal of this research study was to develop a specialized exercise program for individuals with Down syndrome using the physical therapy approach of a systems review as the foundation. We first conducted an overview of the literature on co-morbidities in adults with Down syndrome using the systems review method to categorize these findings. We extracted recommendations for content and delivery of an exercise program based on the literature review, and finally composed a specialized exercise program for individuals with Down syndrome adhering to these recommendations.

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BACKGROUND: People with Down syndrome often present with balance deficits, which compromise safety during daily activity. While evidence shows that exercise can improve balance in the Down syndrome population, it is unclear if a telehealth method will elicit similar benefits. We aimed to examine the effects of a virtual exercise program on balance in adults with Down syndrome. METHODS: Eighteen low-active participants with Down syndrome completed a 12-week telehealth exercise program based on the Mann Method. Balance testing took place before and after the intervention, which included: TUG, MCTSIB, FICSIT-4, and FRT. This study was registered as a clinical trial on ClinicalTrials.gov, identifier: NCT04647851. RESULTS: Significant improvement was seen in the TUG (p = .043), FICSIT-4 (p = .019) and FRT (p = .019). All participants achieved maximum scores on the MCTSIB in pre- and post-testing. CONCLUSIONS: Balance in low-active adults with Down syndrome significantly improved following the telehealth exercise program, which we attribute to the tailored exercises that address visual/vestibular deficits and hip muscle weakness.

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Various factors may alter the risk for cardiovascular disease in adults with Down syndrome (Ds), yet few studies have examined differences in cardiac physiology in this population. Previous research suggested lower systolic and diastolic function, but inconsistent methodologies and younger samples warrant research in adults with Ds. Our aim is to compare the cardiac structure and function of adults with Ds to age- and sex-matched adults without Ds. Echocardiography was used to assess systolic function, diastolic function, and cardiac structure in n = 19 adults (Ds n = 9, control n = 10). Regarding cardiac structure, adults with Ds had increased left ventricular posterior wall thickness at end-systole compared to adults without Ds (p = 0.007). Regarding systolic and diastolic function, adults with Ds were found to have lower septal peak systolic annular velocity (S') (p = 0.026), lower lateral and septal mitral annular early diastolic velocity (E') (p = 0.007 and p = 0.025, respectively), lower lateral peak mitral annular late diastolic velocity (A') (p = 0.027), and higher lateral and septal mitral annular early systolic velocity to diastolic velocity ratios (E/e') (p = 0.001 and p = 0.001, respectively). Differences in both cardiac structure and function were found when comparing adults with Ds to matched adults without Ds. Most of the differences were indicative of worse diastolic function.

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BACKGROUND: Professional caregivers are important in the daily support of lifestyle change for adults with mild intellectual disabilities; however, little is known about which behaviour change techniques (BCTs) are actually used. This study aims to gain insight in their use for lifestyle behaviour change using video observations. METHODS: Professional caregivers (N = 14) were observed in daily work supporting adults with mild intellectual disabilities. Videos were analysed using the Coventry Aberdeen London Refined (CALO-RE-NL) taxonomy and BCTs utilised were coded. RESULTS: Twenty one out of 40 BCTs were used by professional caregivers. The BCTs 'Information about others' approval', 'Identification as role model', 'Rewards on successful behaviour', 'Review behavioural goals' and 'Instructions on how to perform the behaviour' were most employed. CONCLUSION: Professional caregivers used BCTs to support healthier lifestyle behaviour of adults with mild intellectual disabilities. However, most promising of them as defined previous by professionals were rarely used by professional caregivers.

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Individuals with intellectual disability (ID) need support from direct support professionals (DSPs) to engage in a healthy lifestyle. However, literature shows DSPs feel insufficiently equipped to support a healthy lifestyle. Therefore, the aim of this study is to develop a theory-based program for DSPs to support physical activity and healthy nutrition for people with moderate to profound levels of ID, and to design its evaluation. The Intervention Mapping Protocol (IM) was followed to develop a theory-based program for DSPs. The program evaluation consists of process and feasibility evaluations. This study provided a theory-based program consisting of a training and education section with online and face-to-face components to support DSPs in promoting health for people with ID.

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INTRODUCTION: The Healthy Ageing and Intellectual Disability (HA-ID) study is a prospective multicentre cohort study in the Netherlands that started in 2008, including 1050 older adults (aged ≥50) with intellectual disabilities (ID). The study is designed to learn more about the health and health risks of this group as they age. Compared with the amount of research in the general population, epidemiological research into the health of older adults with ID is still in its infancy. Longitudinal data about the health of this vulnerable and relatively unhealthy group are needed so that policy and care can be prioritised and for guiding clinical decision making about screening, prevention and treatment to improve healthy ageing. METHODS AND ANALYSIS: This article presents a summary of the previous findings of the HA-ID study and describes the design of the 10-year follow-up in which a wide range of health data will be collected within five research themes: (1) cardiovascular disease; (2) physical activity, fitness and musculoskeletal disorders; (3) psychological problems and psychiatric disorders; (4) nutrition and nutritional state; and (5) frailty. ETHICS AND DISSEMINATION: Ethical approval for the 10-year follow-up measurements of the HA-ID study has been obtained from the Medical Ethics Review Committee of the Erasmus MC, University Medical Centre Rotterdam (MEC-2019-0562). TRIAL REGISTRATION NUMBER: This cohort study is registered in the Dutch Trial Register (NTR number NL8564) and has been conducted according to the principles of the Declaration of Helsinki.

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OBJECTIVE: People with intellectual disabilities (ID) are largely dependent on their environment to live healthily and, in this, ID-support organizations play a vital role. An environmental asset mapping tool for ID-support settings has been developed. This study aims to provide insight into whether or not the tool can provide a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. METHODS: Fifty-seven users from four setting completed the tool on availability, user satisfaction, and dreams regarding social, physical, organizational, and financial assets. RESULTS: The findings provide a comprehensive view of available assets. Together with user satisfaction and dreams for improvements, they provide actionable knowledge for improving the health-promoting capacities of the settings, including: (1) how use of available assets can be improved, (2) the type of assets that should be enriched, and (3) the assets that can be added to the system. CONCLUSION: The asset mapping tool provides a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. PRACTICE IMPLICATIONS: ID-support organizations can use the tool to generate actionable bottom-up knowledge for priority setting and implementing interventions to improve their health-promoting capacities.

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Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustifiably exclude individuals with ID from IC treatment. Our objective was to compare the classification of individuals with ID into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic. Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classified according to the CFS and the ID-frailty index. Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classified as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classified as at least severely frail (CFS score 7-9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classified by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID. Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.

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Previous research suggests individuals with intellectual disabilities (ID) may experience autonomic dysfunction, however, this has not been thoroughly investigated. The aim of this study was to compare the autonomic response to standing up (active orthostasis) and head-up tilt (passive orthostasis) in individuals with ID to a control group without ID. Eighteen individuals with and 18 individuals without ID were instrumented with an ECG-lead and finger-photoplethysmography for continuous heart rate and blood pressure recordings. The active and passive orthostasis protocol consisted of 10-min supine rest, 10-min standing, 10-min supine recovery, 5-min head-up tilt at 70°, followed by 10-min supine recovery. The last 5 min of each position was used to calculate hemodynamic and autonomic function (time- and frequency-domain heart rate and blood pressure variability measures and baroreflex sensitivity). Individuals with ID had higher heart rate during baseline and recovery (P < 0.05), and an attenuated hemodynamic (stroke volume, heart rate) and heart rate variability response to active and passive orthostasis (interaction effect P < 0.05) compared with individuals without ID. Mean arterial pressure (MAP) was higher in individuals with ID at all timepoints. Individuals with ID demonstrated altered hemodynamic and autonomic regulation compared with a sex- and age-matched control group, evidenced by a higher mean arterial pressure and a reduced response in parasympathetic modulation to active and passive orthostasis.NEW & NOTEWORTHY Individuals with ID demonstrated altered hemodynamic and autonomic regulation to the clinical autonomic function tasks standing up and head-up tilt (active and passive orthostasis). Higher resting heart rate and higher MAP throughout the protocol suggest a higher arousal level, and individuals with ID showed a blunted response in parasympathetic modulation. Further research should investigate the relationship of these findings with clinical outcomes.

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BACKGROUND: Behaviour change techniques (BCTs) can be employed to support a healthy lifestyle for people with intellectual disabilities. The aim of this study is to determine whether and which BCTs are used by direct support professionals (DSPs) for supporting healthy lifestyle behaviour of people with moderate to profound intellectual disabilities. METHOD: Direct support professionals (n = 18) were observed in their daily work using audio-visual recordings. To code BCTs, the Coventry Aberdeen London Refined (CALO-RE-NL) taxonomy was employed. RESULTS: Direct support professionals used 33 BCTs out of 42. The most used BCTs were as follows: 'feedback on performance', 'instructions on how to perform the behaviour', 'doing together', 'rewards on successful behaviour', 'reward effort towards behaviour', 'DSP changes environment', 'graded tasks', 'prompt practice' and 'model/demonstrate behaviour'. CONCLUSIONS: Although a variety of BCTs is used by DSPs in their support of people with moderate to profound intellectual disabilities when facilitating healthy lifestyle behaviour, they rely on nine of them.

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INTRODUCTION: Individuals with intellectual disability (ID) have an increased risk of cardiovascular disease and reduced work capacity, which could partly be explained by alterations to autonomic and hemodynamic regulation. The measurement of heart rate and blood pressure during isometric handgrip (HG) exercise, a sympathoexcitatory stimulus, is a noninvasive method to investigate autonomic and hemodynamic alterations. The purpose of this study was to assess alterations to autonomic and associated hemodynamic regulation between individuals with ID and a matched control group during isometric HG exercise. METHODS: Individuals with ID (n = 13; 31 ± 2 yr, 27.6 ± 7.7 kg·m-2) and without ID (n = 16; 29 ± 7 yr, 24.2 ± 2.8 kg·m-2) performed 2 min of isometric HG exercise at 30% of maximal voluntary contraction (MVC) in the seated position. Blood pressure was averaged for 2 min before, during, and after HG exercise (mean arterial pressure [MAP], systolic blood pressure, and diastolic blood pressure). Heart rate variability, blood pressure variability, and baroreflex sensitivity were calculated from the continuous blood pressure and heart rate recordings. RESULTS: Isometric HG elicited a blunted response in systolic blood pressure, diastolic blood pressure, and MAP among individuals with ID compared with individuals without ID, even after controlling for strength (MAP: rest, HG, recovery; ID: 103 ± 7, 108 ± 9, 103 ± 7; without ID: 102 ± 7, 116 ± 10, 104 ± 10 mm Hg; interaction P < 0.05). Individuals with ID also had an attenuated baroreflex sensitivity response to HG exercise compared with individuals without ID (interaction P = 0.041), but these effects were no longer significant after controlling for maximal voluntary contraction. Indices of heart rate variability and blood pressure variability were not different between groups overall or in response to HG exercise (P > 0.05). CONCLUSIONS: Individuals with ID have a blunted hemodynamic and autonomic response to isometric HG exercise compared with individuals without ID.

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BACKGROUND: People with intellectual disabilities (ID) depend on their environment to live healthily. Asset-based health promotion enhances a settings' health-promoting capacity starting with identifying protective or promotive factors that sustain health. METHOD: This inclusive mixed-methods study used group sessions to generate and rank ideas on assets supporting healthy nutrition and physical activity in Dutch intellectual disability care settings. Participants included people with moderate intellectual disabilities and family and care professionals of people with severe/profound intellectual disabilities. RESULTS: Fifty-one participants identified 185 assets in group sessions. They include the following: (i) the social network and ways "people" can support, (ii) assets in/around "places," and person-environment fit, and (iii) "preconditions": health care, prevention, budget, and policy. CONCLUSION: This inclusive research provides a user perspective on assets in the living environment supporting healthy living. This gives insight in contextual factors needed for development and sustainable embedment of health promotion in the systems of intellectual disability support settings.

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BACKGROUND: Overweight/obesity and poor physical fitness are two prevalent lifestyle-related problems in older adults with intellectual disabilities, which each require a different approach. To improve healthy ageing, we assessed whether fatness or fitness is more important for survival in older adults with intellectual disabilities. METHODS: In the HA-ID study, we measured obesity and fitness of 874 older adults with intellectual disabilities (61.4 ± 7.8 years). All-cause mortality was assessed over a 5-year follow-up period. RESULTS: Fitness, but not obesity, was significantly related to survival (HR range of 0.17-0.22). People who were unfit were 3.58 (95% CI = 1.72-7.46) to 4.59 (95% CI = 1.97-10.68) times more likely to die within the follow-up period than people who were fit, regardless of obesity. CONCLUSION: This was the first study to show that being fit is more important for survival than fatness in older adults with intellectual disabilities. The emphasis should, therefore, shift from weight reduction to improving physical fitness.

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INTRODUCTION: Individuals with intellectual disability have a high prevalence of obesity and low physical activity levels, which are risk factors for hypertension. This study estimated the prevalence of hypertension in a global data set of adults with intellectual disability participating in Special Olympics and investigated the role of physical activity and obesity in hypertension risk. METHODS: A total of 33,122 individuals aged ≥18 years with intellectual disability who participated in Special Olympic events from 2014 to 2018 had their brachial blood pressure, BMI, and self-reported physical activity assessed. Hypertension was classified using 2017 American College of Cardiology/American Heart Association guidelines (systolic blood pressure≥130 mmHg and diastolic blood pressure≥80 mmHg). Data were analyzed in 2019. RESULTS: Participants were aged 31 (SD=11) years, 64% male, and had a resting blood pressure of 121 (SD=16)/76 (SD=12) mmHg. The population was 48% (95% CI=47.5%, 48.6%) hypertensive. Male participants had a higher prevalence of hypertension (50.7%, 95% CI=50.1%, 51.4%) than female participants (43.1%, 95% CI=42.2%, 44.0%), with prevalence increasing with age. Odds of hypertension increased when performing no or insufficient physical activity and with increasing obesity (p<0.01), tripling (OR=3.06, 3.66) for all individuals who performed no physical activity except for those of normal weight (OR=1.72), and doubling (OR=2.13-3.87) for individuals who were obese or morbidly obese across all physical activity levels. CONCLUSIONS: This study is the first to determine population-based prevalence rates of hypertension in individuals with intellectual disability. It highlights the similarity in prevalence to the general population. The results emphasize the importance of population-wide screening, increasing physical activity, and reducing obesity in decreasing cardiovascular risk in this population.

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People with intellectual disabilities (ID) have unhealthier lifestyles than the general population. To sustainably improve their lifestyle and health status, a whole-system approach to creating healthy environments is crucial. To gain insight into how support for physical activity and healthy nutrition can be embedded in a setting, asset mapping can be helpful. Asset mapping involves creating a bottom-up overview of promoting and protective factors for health. However, there is no asset mapping tool available for ID support settings. This study aims to develop an asset mapping tool in collaboration with people with ID to gain insight into assets for healthy nutrition and physical activity in such settings. The tool is based on previous research and development continued in an iterative and inclusive process in order to create a clear, comprehensive, and usable tool. Expert interviews (n = 7), interviews with end-users (n = 7), and pilot testing (n = 16) were conducted to refine the tool. Pilot participants perceived the tool as helpful in pinpointing perceived assets and in prompting ideas on how to create inclusive environments with support for physical activity and healthy nutrition. This overview of assets can be helpful for mobilizing assets and building the health-promoting capacities of ID support settings.

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INTRODUCTION: Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system with a prevalence of nearly 1 million adults in the United States. MS results in declines in physical activity and peak oxygen consumption that might be independently associated with declines in walking performance. Therefore our purpose was to evaluate the association between physical activity and peak oxygen consumption with walking performance in individuals with MS. METHODS: Fifty individuals with MS between the ages of 18-70 yrs. (Female: 38; 46  ±  12 yrs.; BMI: 28.5  ±  6.4; EDSS: 3.3 [IQR: 2.5-4]) performed a maximal incremental cycle test to assess peak oxygen consumption (VO2peak), and wore an accelerometer for one week to measure moderate-to-vigorous physical activity (MVPA). Subjects further completed a timed 25-foot walk test (T25FW) and 6-minute walk (6MW) to measure walking performance. RESULTS: MVPA and VO2peak were correlated with 6MW and T25FW (p < 0.05). When combined in multivariate regression analyses, VO2peak and MVPA were both significant contributors of T25FW speed and 6MW, but after controlling for sex and age, MVPA was the only significant contributor (ß = 0.32 and ß = 0.44, respectively). CONCLUSION: Both higher MVPA and VO2peak were associated with better walking performance and in a combined model physical activity, but not peak oxygen consumption, remained an independent contributor to walking performance in individuals with MS. These results suggest that improving MVPA is a potential target for interventions to improve walking performance in persons with MS.

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Physical fitness is positively related to health outcomes like morbidity and all-cause mortality, with minimally required cutoff values to generate those health benefits. Individuals with intellectual disability (ID) exhibit very low fitness levels well below those cutoff values. Our novel hypothesis is that even among very unfit, older adults with ID, small changes in fitness translate to major changes in health.

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BACKGROUND: The cardiovascular disease (CVD) risk is high in adults with intellectual disabilities. This CVD risk can potentially be decreased with a resistance training (RT) programme at vigorous intensity, following previous research on successful High-Intensity Training programmes. Our aim was to explore the feasibility of a vigorous RT-programme for adults with intellectual disabilities with CVD risk factors. METHOD: Twenty-four adults with intellectual disabilities with at least one CVD risk factor participated in a 24-week RT-programme. The training intensity was increased from novice (50%1RM) to vigorous (75%-80%1RM). Feasibility was based on the achieved training intensity at the end of the RT-programme. RESULTS: Nineteen participants finished the RT-programme. Feasibility was good as 58% (11 out of 19) of the participants worked out at vigorous intensity at the end of the programme. CONCLUSIONS: It is feasible for the majority of adults with intellectual disabilities with CVD risk factors to exercise at vigorous intensity.

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Background: Low levels of physical fitness are associated with low physical and mental health. The aims of this study were to assess the health-related physical fitness of children with intellectual disability (ID), and study the association of physical activity and motor development with physical fitness.Methods: One hundred and twenty-eight children with moderate to severe ID (83 boys; age 2-18 years) visiting specialised day programme centres engaged in field-based physical fitness tests (body composition, muscular strength, muscular endurance, and cardiorespiratory fitness). Scores were compared to reference values, and with linear regression analysis the association between the fitness outcomes and physical activity and motor development was studied.Results: High rates of overweight (23-25%) and obesity (10-15%) were found. A majority of the participants (71-91%) scored below reference values for muscular strength, endurance, and cardiorespiratory fitness tests. Physical activity and motor development were positively associated with scores on several fitness test (ß = 0.27-0.44; p < 0.05).Conclusions: Children with moderate to severe ID visiting specialised day programme centres have strikingly low physical fitness levels. Policies and interventions to increase the physical fitness for this specific group of children are urgently needed, in which increasing physical activity and motor skills are expected to be effective components.Implications for rehabilitationStrikingly low levels of physical fitness were seen in children and adolescents with moderate to severe intellectual disabilities.This vulnerable group is in need of appropriate interventions to increase their physical fitness levels.Increasing the physical activity is a potential component in these interventions.Improving motor development will most likely lead to improved physical fitness as well.

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Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets. Implications for rehabilitationIndividuals with intellectual disabilities have low physical fitness levels, and a high risk for unnecessary functional decline and unhealthy aging.Physical fitness testing could help improve, adapt and evaluate exercise interventions, but is challenging in this population.This paper proposes a selection of tests (ID-fitscan) with sufficient feasibility, reliability, and validity in this population, and provides reference values to aid interpretation of physical fitness test outcomes in individuals with intellectual disabilities.The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness, and thereby allowing for a better interpretation of results by using the same tests, and an increasing knowledge of the physical fitness levels of this population.

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