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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 intellectua...

markdownabstractBackground: Regular participation of children and adolescents with intellectual disabilites in physical activity is important to maintain good health and to acquire motor skills. The aim of this study was to investigate the habitual physical activity in these children. Methods: Sixty-eight children and adolescents (2–18 years) with a moderate-tosevere intellectual disability were included in the analyses. They wore an accelerometer on eight consecutive days. Data was analysed by use of descriptive statistics and multiple linear regression analyses. Results: The participants took on average 6,677 ± 2,600 steps per day, with intensity of 1,040 ± 431 counts per minute. In total, 47% of the participants were meeting physical activity recommendations. Low motor development was associated with low physical activity. Conclusions: As more than half of the participants were not meeting the recommendations, family and caregivers of these children should focus on supporting and motivating them to explore and expand their physical activities.

We aim to provide insight into the cause-specific mortality of older adults with intellectual disability (ID), with and without Down syndrome (DS), and compare this to the general population. Immediate and primary cause of death were collected through medical files of 1,050 older adults with ID, 5 years after the start of the Healthy Ageing and Intellectual Disabilities (HA-ID) study. During the follow-up period, 207 (19.7%) participants died, of whom 54 (26.1%) had DS. Respiratory failure was the most common immediate cause of death (43.4%), followed by dehydration/malnutrition (20.8%), and cardiovascular diseases (9.4%). In adults with DS, the most common cause was respiratory disease (73.3%), infectious and bacterial diseases (4.4%), and diseases of the digestive system (4.4%). Diseases of the respiratory system also formed the largest group of primary causes of death (32.1%; 80.4% was due to pneumonia), followed by neoplasms (17.6%), and diseases of the circulatory system (8.2%). In adults with DS, the main primary cause was also respiratory diseases (51.1%), followed by dementia (22.2%).

Objective. The presence of apolipoprotein E (ApoE) ɛ4 allele might be related to higher pain experience due to increased risk for potentially painful physical conditions and cognitive impairment (less efficient coping with pain). This hypothesis is clinically relevant to examine in adults with Down syndrome (DS) because they are at risk for painful physical conditions, their presence of ApoE ε4 is related to cognitive impairment, and their pain experience is unclear. The present pilot study addressed the associations between ApoE genotype, cognition, and pain in DS.Method. DNA analysis of saliva, neuropsychological tests (assessing memory and executive functioning), and self-reporting pain scales (in rest and after movement) were used with a cross-sectional design in 146 adults with DS (mean age 39.1 years, mild to moderate intellectual disabilities, 46% men, 30% ApoE ɛ4 carrier).Results. The difference between ApoE ɛ4 carriers and noncarriers was not statistically significant for cognitive function, pain experience, and prevalence of potentially painful conditions. Among ɛ4 carriers, the presence of potentially painful conditions was associated with worse executive functioning (p = .022, r = .39).Conclusions.The clinical implication of the results is that ApoE ɛ4 in DS may play a role in pain, although the theoretical explanation via associations with pain experience and cognition remains unclear. Further research should include a large sample of adults with DS selected on diagnosed painful conditions to obtain more insight into the possible role of ApoE genotype (and its association with cognition) in the pain experience of this target group.

In general, disabilities are considered a consequence of frailty rather than a cause of frailty, whereas in people with intellectual disabilities (ID), disabilities are often lifelong, which could have consequences for the feasibility and validity of frailty instruments. To better understand frailty in people with ID, we compared two broadly used concepts: the frailty phenotype (FP) and the frailty index (FI) taking into account their feasibility (e.g., percentage of participants able to complete the frailty assessments), agreement, validity (based on 5-year mortality risk), influence of motor disability, and the relation between single frailty variables and mortality. The FI and an adapted version of the FP were applied to a representative dataset of 1050 people with ID, aged 50 years and over. The FI was feasible in a larger part of the dataset (94 %) than the adapted FP: 29 % for all five items, and 81 % for at least three items. There was a slight agreement between the approaches (κ = 0.3). However defined, frailty was related with mortality, but the FI showed higher discriminative ability and a stronger relation with mortality, especially when adjusted for motor disabilities. Concluding, these results imply that the used FI is a stronger predictor for mortality and has higher feasibility than our adaptation of the FP, in older people with ID. Possible explanations of our findings are that we did not use the exact FP variables or that the FI includes multiple health domains, and the variables of the FI have lower sensitivity to lifelong disabilities and are less determined by mobility.

Background: The physical activity level of older adults with intellectual disabilities (ID) is extremely low, and their fitness levels are far beneath accepted norms for older people with normal intelligence and comparable with frail older people. A physical activity programme, including an education programme, was developed for older adults with ID using behaviour change techniques. The programme aimed at improving or maintaining adequate levels of physical activity (primary outcome measure) and motor fitness, cardio respiratory fitness, morphologic and metabolic fitness, activities of daily living, cognitive functioning and depressive symptoms (secondary outcome measures). Method: The programme's efficacy was evaluated in a cluster-randomised clinical trial among people aged 43years and over with mild-moderate levels of ID. Five day-activity centres were randomised to the participation group. In these centres, 81 older adults participated in groups of 8 to 10 in the programme, three times a week during 8months. The programme was executed by physical activity instructors and staff of day-activity centres. Five other day-activity centres were randomised to the control group; 70 older adults in these centres received care as usual. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

The use of the Self-reporting Tool On Pain in people with Intellectual Disabilities (STOP-ID!), an online application developed by the authors to aid in the self-reporting of pain, was evaluated in 40 adults with Down syndrome. Comprehension of the use of the tool (the ability to recognize representations for vocabulary and pain, and to navigate the tool interface), and the use of the tool to self-report pain experience, were investigated. The use of the online tool was investigated with both a laptop and a tablet computer in a crossover design. The results provide evidence that more participants recognized representations of pain location and pain affect than representations of pain intensity and pain quality. A small percentage of participants demonstrated the ability to recognize all of the representations of vocabulary items and to navigate the tool without assistance (18% laptop, 18% tablet). Half of the participants were able to report at least one pain component of a current or remembered pain experience without assistance (50% laptop, 53% tablet). Ways to improve the design of tools for reporting pain and to improve performance are suggested.

Background Children with severe neurological impairment and intellectual disability are prone to low bone quality and fractures. Objective We studied the feasibility of automated radiogrammetry in assessing bone quality in this specific group of children. We measured outcome of bone quality and, because these children tend to have altered skeletal maturation, we also studied bone age. Materials and methods We used hand radiographs obtained in 95 children (mean age 11.4 years) presenting at outpatient paediatric clinics. We used BoneXpert software to determine bone quality, expressed as paediatric bone index and bone age. Results Regarding feasibility, we successfully obtained a paediatric bone index in 60 children (63.2%). The results on bone quality showed a mean paediatric bone index standard deviation score of −1.85, significantly lower than that of healthy peers (P

Background: With increasing longevity and a similar or increased prevalence of cardiovascular disease risk factors (as compared to the general population), people with intellectual disabilities (IDs) are at risk of developing cardiovascular disease. However, prospective studies on incidence and influencing factors of cardiovascular disease and mortality are lacking. Methods: A three year follow-up study was undertaken to study the incidence and symptoms at presentation of myocardial accident, stroke and heart failure in older people with ID. Furthermore, the predictive value of cardiovascular disease risk factors on myocardial accident, stroke and heart failure and on all-cause mortality were studied. The baseline group consisted of the 1050 participants, aged 50 years and over, in the Dutch Healthy Ageing and Intellectual Disability (HA-ID) study. Baseline measurements were conducted between November 2008 and July 2010. Three years after baseline, medical files of 790 participants were studied. Results: Cardiovascular disease (myocardial infarction, stroke and heart failure) occurred in 5.9% of the population during 3 year follow-up, and 32% of them died due to the condition. Incidence of myocardial infarction is 2.8 per 1000 personyears, for stroke 3.2 per 1000 personyears and for heart failure 12.5 per 1000 personyears. Incidence of these conditions is probably underestimated, due to atypical symptom presentation. The use of atypical antipsychotics and a history of heart failure were predictive for myocardial infarction. Heart failure was predicted by abdominal obesity, chronic kidney disease and a history of heart failure. A total of cardiovascular disease (myocardial infarction, stroke or heart failure) was predicted by abdominal obesity, a history of stroke and a history of heart failure. A low body-mass index, peripheral arterial disease, chronic kidney disease and inflammation were predictive for 3-year all-cause mortality. Conclusion: Incidence of cardiovascular disease in older people with ID is similar to that in the general population. A pro-active assessment and treatment of the presented cardiovascular disease risk factors may reduce cardiovascular disease and mortality in older people with ID. (C) 2016 Elsevier Ltd. All rights reserved.

Although the population with intellectual disabilities (ID) is increasingly growing older, there seems to be an early onset of functional decline in this group, which could be explained by frailty. We used data from the Healthy Aging and Intellectual Disability study (HA-ID) to measure frailty in people with ID. Frailty was measured with an adapted version of the frailty index, consisting of 50 health and age related deficits. We were the first to measure frailty with a frailty index in this population, and therefore its validity, in terms of predictive value, needed to be established. In the current article we provide an overview of the design of the frailty index and its relation with adverse health outcomes. In a nearly representative study population of 982 50-plus older adults with ID, we studied the prevalence of frailty and its validity over a 3-year follow-up period. Results show that people with ID were earlier and more severely frail than people from the general population. Frailty was related to early mortality, to disabilities in daily functioning and mobility, to increased medication use, and increased care intensity, but not to hospitalization. Using a hypothetical model, we identify possible interventions to increase the healthy life years in people with ID.

Frailty in older people can be seen as the increased likelihood of future negative health outcomes. Lifelong disabilities in people with intellectual disabilities (ID) may not only influence their frailty status but also the consequences. Here, we report the relation between frailty and adverse health outcomes in older people with ID (50 years and over). In a prospective population based study, frailty was measured at baseline with a frailty index in 982 older adults with ID (>= 50 yr). Information on negative health outcomes (falls, fractures, hospitalization, increased medication use, and comorbid conditions) was collected at baseline and after a three-year follow-up period. Odds ratios or regression coefficients for negative health outcomes were estimated with the frailty index, adjusted for gender, age, level of ID, Down syndrome and baseline adverse health condition. The frailty index was related to an increased risk of higher medication use and several comorbid conditions, but not to falls, fractures and hospitalization. Frailty at baseline was related to negative health outcomes three years later in older people with ID, but to a lesser extent than found in the general population. (C) 2014 Elsevier Ltd. All rights reserved.

Peripheral arterial disease (PAD) is a manifestation of atherosclerosis below the bifurcation of the abdominal aorta. PAD increases the risk of cardiovascular disease and associated mortality. Little is known about the prevalence of PAD in middle-aged persons with intellectual disabilities (ID). We determined the prevalence of PAD among people with ID aged 40-59 years. Independent associations between PAD and patient and care characteristics were explored. A multi-center cross-sectional observational study was conducted in four care providing agencies for people with ID in the Netherlands. We included 407 participants with mild to profound ID aged 40-59 years, receiving medical care from specialized ID physicians. The ankle-brachial index was used to diagnose PAD. The overall prevalence of PAD was 8.4% (95% CI = 6.0-11.4%), with no significant differences between age groups 40-49 years (8.2%) and 50-59 years (8.5%). None of the participants had been diagnosed with PAD prior to this study and only one participant with PAD had PAD-related symptoms (1/34). Wheelchair dependence was independently associated with PAD (OR = 5.43). Prevalence of PAD among people with ID is high, which is especially remarkable in age group 40-49 years. Physicians need to be aware of this high prevalence of PAD and the increased risk of cardiovascular disease in (young) people with ID. (C) 2014 Elsevier Ltd. All rights reserved.

The ability to perform instrumental activities of daily living (IADL) is important for one's level of independence. A high incidence of limitations in IADL is seen in older adults with intellectual disabilities (ID), which is an important determinant for the amount of support one needs. The aim of this study was to assess the predictive value of physical fitness for the ability to perform IADL, over a 3-year follow-up period, in 601 older adults with ID. At baseline, an extensive physical fitness assessment was performed. In addition, professional caregivers completed the Lawton IADL scale, both at baseline and at follow-up. The average ability to perform IADL declined significantly over the 3-year follow-up period. A decline in the ability to perform IADL was seen in 44.3% of the participants. The percentage of participants being completely independent in IADL declined from 2.7% to 1.3%. Manual dexterity, balance, comfortable and fast gait speed, muscular endurance, and cardiorespiratory fitness were significant predictors for a decline in IADL after correcting for baseline IADL and personal characteristics (age, gender, level of ID, and Down syndrome). This can be interpreted as representing the predictive validity of the physical tests for a decline in IADL. This study shows that even though older adults with ID experience dependency on others due to cognitive limitations, physical fitness also is an important aspect for IADL, which stresses the importance of using physical fitness tests and physical fitness enhancing programs in the care for older adults with ID. (C) 2015 Elsevier Ltd. All rights reserved.

We studied the association between multimorbidity, polypharmacy, and mortality in 1,050 older adults (50+) with intellectual disability (ID). Multimorbidity (presence of ≥ 4 chronic health conditions) and polypharmacy (presence ≥ 5 chronic medication prescriptions) were collected at baseline. Multimorbidity included a wide range of disorders, including hearing impairment, thyroid dysfunction, autism, and cancer. Mortality data were collected during a 5-year follow-up period. Cox proportional hazards models were used to determine the independent association between multimorbidity and polypharmacy with survival. Models were adjusted for age, sex, level of ID, and the presence of Down syndrome. We observed that people classified as having multimorbidity or polypharmacy at baseline were 2.60 (95% CI = 1.86–3.66) and 2.32 (95% CI = 1.70–3.16) times more likely to decease during the follow-up period, respectively, independent of age, sex, level of ID, and the presence of Down syndrome. Although slightly attenuated, we found similar hazard ratios if the model for multimorbidity was adjusted for polypharmacy and vice versa. We showed for the first time that multimorbidity and polypharmacy are strong predictors for mortality in people with ID. Awareness and screening of these conditions is important to start existing treatments as soon as possible. Future research is required to develop interventions for older people with ID, aiming to reduce the incidence of polypharmacy and multimorbidity.

Physical fitness is an important marker for health. In this study we investigated the feasibility and reliability of health-related physical fitness tests in children with moderate to severe levels of intellectual disability. Thirty-nine children (2–18 yrs) performed tests for muscular strength and endurance, the modified 6-minute walk test (6mwt) for cardiorespiratory fitness, and body composition tests, and 30–97% of the tests were successfully completed. Short-term test-retest reliability of all tests was good (Intraclass Correlation Coefficient [ICC] > .8), long-term test-retest reliability was good for most tests (ICC > .7), but low ICCs were found for most strength tests. Measuring body composition and cardiorespiratory fitness is feasible and reliable. Measuring muscle endurance is fairly feasible and reliable.

Background Testing physical fitness in children and adolescents with intellectual disabilities (ID) can be challenging. This review provides an overview on psychometric properties of field-based physical fitness tests studied in children and adolescents with ID. Methods A literature search was performed in March 2014. Studies were included if they evaluated feasibility, reliability and/or validity of a field-based physical fitness test in children and adolescents with ID. Results Twenty-six papers met the inclusion criteria and described 18 tests on body composition (4), muscular strength (4), muscular endurance (6), and cardiorespiratory fitness (4). Best results on feasibility, reliability and/or validity were found for bioelectric impedance analysis, body mass index, grip strength, arm hang and distance run/walk tests. These results were mainly found in adolescents with mild to moderate ID. Conclusion Some tests were found feasible, reliable and/or valid in subgroups of children and adolescents with ID, but not in children and adolescents with all ages and levels of ID. Further assessment is needed before wider application in all children and adolescents with ID.

Older people with intellectual disability (ID) are characterized by low physical activity (PA) levels. PA is important for reducing health risks and maintaining adequate fitness levels for performing activities of daily living. The aim of this study was to explore preferences of older adults with ID for specific physical activities, and to gain insight into facilitators and barriers to engaging into PA. Fourteen in-depth interviews and four focus groups were undertaken, with a total of 40 older adults with mild and moderate ID included in the analysis. NVivo software was used for analysing the transcribed verbatim interviews. In total, 30 codes for facilitators and barriers were identified. Themes concerning facilitators to PA were enjoyment, support from others, social contact and friendship, reward, familiarity, and routine of activities. Themes concerning barriers to PA were health and physiological factors, lack of self-confidence, lack of skills, lack of support, transportation problems, costs, and lack of appropriate PA options and materials. The results of the present study suggest that older adults with ID may benefit from specific PA programs, adapted to their individual needs and limitations. Results can be used for developing feasible health promotion programs for older adults with ID.

Heart rate recovery (HRR) after exercise is an independent predictor for cardiovascular and all-cause mortality. To investigate the usefulness of HRR in cardiorespiratory exercise testing in older adults with intellectual disabilities (ID), the aims of this study were (a) to assess HRR in older adults with ID after the 10-m incremental shuttle walking test (isvvr) and (b) its association with personal characteristics (gender, age, distance walked on the ISWT, level of ID, genetic syndrome causing ID, autism, behavioral problems, and peak heart rate (HRpeak)). HRR was assessed after the 10-m incremental shuttle walking test in 300 older adults (>50 years) with borderline to profound ID. HRR was defined as the change from HRpeak during the ISWT to heart rate measured after 1, 2, 3, 4, and 5 min of passive recovery. The largest decrease in heart rate was in the first minute of recovery leveling off toward the fifth minute of recovery. An abnormal HHR (

A high incidence of limitations in daily functioning is seen in older adults with intellectual disabilities (ID), along with poor physical fitness levels. The aim of this study was to assess the predictive value of physical fitness for daily functioning after 3 years, in 602 older adults with borderline to profound ID (>= 50 years). At baseline, physical fitness levels and daily functioning (operationalized as basic activities of daily living [ADL] and mobility) were assessed. After 3 years, the measurements of daily functioning were repeated. At follow-up, 12.6% of the participants were completely independent in ADL and 48.5% had no mobility limitations. More than half of the participants (54.8%) declined in their ability to perform ADL and 37.5% declined in their mobility. Manual dexterity, visual reaction time, balance, comfortable and fast gait speed, muscular endurance, and cardiorespiratory fitness were significant predictors for a decline in ADL. For a decline in mobility, manual dexterity, balance, comfortable and fast walking speed, grip strength, muscular endurance, and cardiorespiratory fitness were all significant predictors. This proves the predictive validity of these physical fitness tests for daily functioning and stresses the importance of using physical fitness tests and implementing physical fitness enhancing programs in the care for older adults with ID. (C) 2014 Elsevier Ltd. All rights reserved.

A high incidence of falls is seen in people with intellectual disabilities (ID), along with poor balance, strength, muscular endurance, and slow gait speed, which are well-established risk factors for falls in the general population. The aim of this study was to assess the predictive value of these physical fitness components for falls in 724 older adults with borderline to profound ID (>= 50 years). Physical fitness was assessed at baseline and data on falls was collected at baseline and after three years. Gait speed was lowest in participants who fell three times or more at follow-up. Gait speed was the only physical fitness component that significantly predicted falls, but did not remain significant after correcting for confounders. Falls at baseline and not having Down syndrome were significant predictors for falls. Extremely low physical fitness levels of older adults with ID, possible strategies to compensate for these low levels, and the finding that falls did not increase with age may explain the limited predictive value of physical fitness found in this study. (C) 2014 Elsevier Ltd. All rights reserved.

Objectives: Older people with intellectual disabilities (ID) may experience more and different symptoms of anxiety than older people with normal intelligence. Study questions: (1) Is the reported severity of anxiety in this group similar to that in the general older population; (2) Are specific anxiety symptoms reported as frequently by both groups? Design: Cross-sectional. Setting: Formal Dutch intellectual disability services and Dutch population-based study. Participants: One hundred fifty-four participants of the Healthy Ageing and Intellectual Disability study with mild or moderate ID (IQ

Frailty is a state of increased vulnerability to adverse health outcomes compared to others of the same age. People with intellectual disabilities (ID) are more frequently and earlier frail compared to the general population. Frailty challenges much of health care, which will likely further increase due to the aging of the population. Before effective interventions can start, more information is necessary about the consequences of frailty in this, already disabled, population. Here we report whether frailty predicts disabilities in daily functioning. Frailty was measured with a frailty index (FI). At baseline and follow-up activities of daily living (ADL), instrumental activities of daily living (IADL) and mobility were collected by informant report. For 703 older people with ID (>= 50 yr) baseline and follow-up measures were known. Multivariate linear regression models were used to predict ADL, IADL and mobility at follow-up. The FI was significantly associated with disabilities in daily functioning independent of baseline characteristics (age, gender, level of ID, Down syndrome) and baseline ADL, IADL or mobility. The FI showed to be most predictive for those with relative high independence at baseline. These results stress the importance for interventions that limit the progression of frailty and, thereby, help to limit further disability. (C) 2014 Elsevier Ltd. All rights reserved.

The current study focuses on the characteristics of older people with intellectual disabilities with the lowest frailty levels. Frailty is an increased risk of adverse health outcomes and dependency. Older adults with intellectual disabilities (ID) show more signs of early frailty than the general population. Knowledge of the least frail group characteristics may provide insight into possibilities to prevent early frailty in older people with intellectual disabilities. This study was part of the Healthy Aging and Intellectual Disability study (HA-ID) which incorporated 1050 adults aged 50 years and over with all levels of ID. Frailty was measured with a frailty index. The least frail group was selected based on a frailty index score 43%). Interventions to prevent or delay frailty in this population are highly recommended and can focus on health characteristics of the least frail group. (C) 2013 Elsevier Ltd. All rights reserved.

A frailty index is a quantitative measure of frailty, based on the nonspecific accumulation of deficits. In the general population the frailty index strongly predicts death and deterioration of independence and health. Few studies focus on frailty in people with intellectual disabilities (ID). However, because of the increasing longevity of people with ID, frailty will become a major healthcare challenge in this population. Here we argue the benefits of using a frailty index to measure frailty in people with ID, as it was suggested that this tool would lead to flawed results in this specific population. Most important, as the exact content of the frailty index is relatively free, the frailty index can include problems that are often present in the ID population, as well as use diagnostic questionnaires that have been validated in people with ID. In addition, as the frailty index is designed using a well-evaluated standardized procedure, results can be compared to the general population. The frailty index is applicable to the ID population and predicts negative health outcomes, making it a useful instrument for policy and research. However, further research on its clinical applicability is required.

Cardiorespiratory fitness is the ability of the circulatory, respiratory and muscular systems to supply oxygen during sustained physical activity. Low cardiorespiratory fitness levels have been found in individuals with intellectual disabilities (ID), which puts them at higher risk for cardiovascular diseases and all-cause mortality. The aims of this review were to update previous reviews about (a) the cardiorespiratory fitness levels and their determinants in individuals with ID, and (b) the validity and reliability of cardiorespiratory fitness testing in individuals with ID. We searched the databases of Pubmed and Embase for relevant studies, resulting in 31 included articles. These studies mainly included younger participants with mild to moderate ID. Results confirmed previous findings of low cardiorespiratory fitness levels in individuals with ID. Cardiorespiratory fitness levels of children and adolescents with ID are already low, with further decline with increasing age. Furthermore, females have lower cardiorespiratory fitness levels than males. Physical inactivity and chronotropic incompetence are most likely to contribute to low cardiorespiratory fitness levels. Peak cardiorespiratory fitness levels of individuals with ID can be assessed with maximal treadmill protocols, after allowing for familiarization sessions. Although, predicting maximal oxygen uptake from field tests is problematic, field tests have been found valid and reliable as indicators of cardiorespiratory fitness. (C) 2013 Elsevier Ltd. All rights reserved.

People with intellectual disabilities (IDs) have a higher risk of painful medical conditions. Partly because of the impaired ability to communicate about it, pain is often undertreated. To strengthen pain assessment in this population, we conducted a systematic review to identify behavioral pain indicators in people with IDs by using Embase, PubMed, PsycINFO, CINAHL, and Cochrane. Inclusion criteria were 1) scientific papers; 2) published in the last 20 years, that is, 1992 to 2012; 3) written in English, 4) using human subjects, 5) intellectual disabilities, 6) pain, 7) behavior, and 8) an association between observable behavior and pain experience. From 527 publications, 27 studies were included. Pain was acute in 14 studies, chronic in 2 studies, both acute and chronic in 2 studies, and unspecified in 9 studies. Methodological quality was assessed with the Mixed Methods Appraisal Tool. Of the 14 categories with behavioral pain indicators, motor activity, facial activity, social-emotional indicators, and nonverbal vocal expression were the most frequently reported. Most of the behavioral pain indicators are reported in more than 1 study and form a possible clinical relevant set of indicators for pain in people with IDs. Determination of a behavioral pattern specific for pain, however, remains a challenge for future research. Perspective This review focuses on categories of behavior indicators related to pain in people with IDs. The quality of evidence is critically discussed per category. This set of indicators could potentially help clinicians to recognize pain in this population, especially when unique individual pain responses are also identified. © 2013 by the American Pain Society.

Little is known about sleep in older adults with intellectual disability (ID). Aim of this study was to investigate sleep and its associated factors, and to estimate the prevalence of sleep problems in this population. This study was part of the healthy aging and intellectual disabilities study. Sleep was assessed using the Actiwatch, a watch-like device that measures sleep and wakefulness based on movement activity. Participants (n=551) wore the Actiwatch at least seven days and nights continuously. Variables of interest were time in bed (TIB), sleep onset latency, total sleep time, wake after sleep onset, sleep efficiency and get-up time latency. Multivariate analyses were used to investigate factors associated with these sleep parameters. Provisional definitions were drafted to estimate the prevalence of sleep problems. Mean TIB was 630 min. Longer TIB was independently associated with higher age, more severe level of ID, living at a central facility, wheelchair dependence, female gender and depressive symptoms (adjusted R(2)=.358, F-change=8.302, p.001). The prevalence of sleep problems was 23.9% settling problem, 63.1% night waking problem, 20.9% short sleep time, 9.3% early waking problem. 72% of the participants had at least one problem, 12.3% had three or more sleep problems. Older adults with ID lie in bed very long, and the prevalence of sleep problems is high. Further research should focus on causality of the relationships found in this study, and effects of sleep problems on health and well-being in this population.

Frailty is increasingly being recognized as a relevant health measure in older populations, associated with an increased risk of adverse health outcomes and care dependency. Because it is generally perceived that people with intellectual disabilities are "old" from age 50 onwards, frailty research in this group might lead to an understanding of factors, contributing to this perception. The development since the 1990s of conceptual and operational definitions of frailty has resulted in different approaches: biological (phenotype), multidimensional, and non-specific deficit accumulation. All approaches consider disability a consequence rather than a cause of frailty. This may be different for long-disabled populations, which would have consequences for validity of frailty measures. First research shows that the different approaches are applicable to study populations with intellectual disabilities as well. Frailty as defined by both the phenotypic and deficit accumulation approach appears to develop considerably earlier and is more severe in people with intellectual disabilities than in the general older population, supporting the notion of early aging. Before any clinical implications can be outlined, health outcomes (validity), causes, and prevention of frailty should be investigated.

Antipsychotics are frequently prescribed agents in individuals with intellectual disability, often for behavioral symptoms. Efficacy of antipsychotics for this is ambiguous, so discontinuation should be considered. Weight gain and metabolic dysregulation are well-known adverse effects of antipsychotics which increase the risk of the metabolic syndrome.We performed a discontinuation study in 99 adults with intellectual disability, living in residential facilities who used antipsychotics for behavioral symptoms for more than 1 year. The aim of the present study was to investigate the effects of discontinuation of long-term used antipsychotics on weight, body mass index (BMI), and parameters of the metabolic syndrome and to investigate the influence of genetic polymorphisms and medication factors on these outcomes.Discontinuation of antipsychotics led to a mean decrease of 4 cm waist circumference, of 3.5 kg weight, 1.4 kg/m(2) BMI, and 7.1 mm Hg systolic blood pressure. In those participants who had not completely discontinued use of antipsychotics we found a decrease in weight and BMI and an increase in fasting glucose. The presence of the C-allele of serotonin 5-hydroxytryptamine receptor polymorphism rs141334 was associated with higher waist circumference and higher plasma levels of triglycerides and lower levels of high-density lipoprotein. Achievement of complete discontinuation predicted a larger decrease in waist circumference and BMI.In conclusion, results of the study show the beneficial effects of discontinuation of long-term used antipsychotics on metabolic outcomes.

Background Excessive prescribing of antibiotics in patients with lower respiratory tract infections (LRTIs) is common in the general population. Due to communication difficulties, it is hypothesised that prescriptions are even more commonplace in the primary care of individuals with intellectual disabilities. Point-of-care C-reactive protein (POC-CRP) testing might lead to more efficient prescribing of antibiotics. Aim To evaluate the effect of POC-CRP testing on antibiotic prescriptions for LRTIs by physicians specialising in the care of individuals with intellectual disabilities. Design and setting A prospective case-control study in four care centres for individuals with intellectual disabilities in The Netherlands. Method Between 27 October 2010 and 27 October 2011, a prospective efficiency study was performed with a base population of 1472 individuals. This population consisted of 882 individuals in whom POC-CRP tests were used and a control group (n = 590) in whom no POC-CRP test was performed. Results Of the 48 patients in the control group who were diagnosed as having an LRTI, 43 (90%) received antibiotics, compared with 59 out of the 144 patients (41%) in the case group (OR = 12.0; 95% CI = 4.1-35.3). No significant differences in outcome were found between both groups during a follow-up period of 1 month. Conclusion This study shows that the use of POC-CRP testing in patients with intellectual disabilities and LRTIs can lead to a significant reduction in antibiotic prescriptions, with no significant differences in outcome during follow-up.

Background Depression, anxiety, diabetes and cardiovascular risk factors are frequent health problems among older people with intellectual disability (ID). These conditions may be bidirectionally related. Depression and anxiety may have biological effects causing glucose intolerance, fat accumulation and also lifestyle changes causing metabolic syndrome. But also the effects of diabetes, metabolic syndrome and subsequent cardiovascular disease may affect mood and anxiety. This study investigated the association between depression, anxiety and diabetes and cardiovascular risk factors in older people with ID. Methods The healthy ageing in intellectual disability-study (HA-ID study) is a cross-sectional study among people aged 50 years and over with ID, receiving formal ID care. Screening instruments for symptoms of anxiety and depression were completed and physical examination and vena-puncture were performed to establish components of the metabolic syndrome, peripheral arterial disease and c-reactive protein. Results Of the 990 people who participated, 17% had symptoms of depression and 16% had symptoms of anxiety. Type I diabetes was present in 1%, type II diabetes in 13% of the study population. Metabolic syndrome, central obesity, hypercholesterolemia and hypertension were present in 45%, 48%, 23% and 53% respectively. In a multivariate logistic regression analysis a significant association was found between increased anxiety symptoms and diabetes only (OR 2.4, 95%CI 1.2–4.9). Conclusions Increased anxiety symptoms and diabetes are related in older people with ID. This association may be bidirectional. No other associations of depression and anxiety symptoms with cardiovascular risk factors could be proven to be significant. Therefore, more research is needed to unravel the mechanisms of stress, mood disorders and cardiovascular disease in older people with ID. To provide comprehensive care for older people with ID, screening for diabetes and components of the metabolic syndrome in people with anxiety or mood disorders, and screening for symptoms of anxiety or depression in people with diabetes is warranted.

Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID in three Dutch care services, the feasibility of 8 physical fitness tests was expressed in completion rates: box and block test, response time test, Berg balance scale, walking speed, grip strength, 30-s chair stand, 10-m incremental shuttle walking test, and the extended modified back saver sit and reach test. All tests had moderate to good feasibility in all subgroups, except for the participants with profound ID (all tests), severe ID (response time test and Berg balance scale), and wheelchair users (all tests that involve the legs). We conclude that the 8 tests are feasible to measure physical fitness in most older adults with ID.

Although there is no strict definition of frailty, it is generally accepted as a state of high vulnerability for adverse health outcomes at older age. Associations between frailty and mortality, dependence, and hospitalization have been shown. We measured the frailty level of older people with intellectual disabilities (ID). Furthermore variation in gender, age, and level of ID were identified. Results were compared to a frailty study in the general European population.This research elaborates on a large cross-sectional study: Healthy Ageing with Intellectual Disability (HA-ID). Nine hundred-eighty-two men and women (≥ 50 yr) with ID were included. Based on the collected data, we developed a frailty index with 51 health-related deficits, and calculated a frailty index score between 0 and 1 for each individual. Deficits included physical, social and psychological problems.The mean frailty index score was 0.27 (standard deviation .13). Frailty was positively correlated with age (r=0.297, p.001). More severe ID was associated with higher frailty scores (β=0.440, p001). The upper limit of the FI was 0.69, which was consistent for all age categories.As people with ID are getting older, the question whether additional years are spent in good health becomes salient. Here, people with ID over age 50 had frailty scores similar to most elderly people over 75 y. Future research is needed to confirm if frail elderly people with ID have an increased risk of adverse health outcomes.

Grip strength is an important predictor of several health outcomes in the general older population. Grip strength assessment is feasible and reliable in older adults with intellectual disabilities (ID), which makes it a valuable measurement for application in this population. The purpose of this study was to investigate the effect of handedness on grip strength in the older population with ID. Handedness and grip strength were assessed in a sample of 1050 older adults (>= 50 years) with borderline to profound ID. Results showed that 26.2% of the study sample was left-handed. In right-handed participants the dominant hand (right) was on average 8.7% stronger than the non-dominant hand (p

Cardiovascular disease occurs as frequently in older people with intellectual disabilities as in the same aged general population. However, there are indications for underdiagnosis of myocardial infarction due to atypical or absent complaints. Obesity, diabetes and peripheral arterial disease are more common in this group than in the general population. Hypertension, metabolic syndrome and kidney disease occur as frequently as in the general population while hypercholesterolemia occurs less often. Cardiovascular disease risk factors are underdiagnosed in people with intellectual disabilities. This could be reduced by educating supporting staff and caregivers and systematic screening for cardiovascular risk factors by the general practitioner. The customary guidelines should be followed in the treatment of cardiovascular risk factors and cardiovascular disease. Lifestyle interventions and treatment of specific causal factors, such as the use of psychotropic drugs and chronic circadian rhythm disorders, require a specialised approach.

A Systematic Tool to Reduce Inappropriate Prescribing (STRIP), which includes the Screening Tool to Alert doctors to Right Treatment (START) and the Screening Tool of Older Peoples' Prescriptions (STOPP), has recently been developed in the Netherlands for older patients with polypharmacy in the general population. Active involvement of the patient is part of this systematic multidisciplinary medication review. Although annual review of pharmacotherapy is recommended for people with an intellectual disability (ID), a specific tool for this population is not yet available. Besides, active involvement can be compromised by ID. Therefore, the objective of this observational pilot study was to evaluate the process of medication review using STRIP in adults with an ID living in a centralized or dependent setting and the identification of drug-related problems using this tool. The study was performed in three residential care organizations for ID. In each organization nine clients with polypharmacy were selected by an investigator (a physician in training to become a specialized physician for individuals with an ID) for a review using STRIP. Clients as well as their legal representatives (usually a family member) and professional caregivers were invited to participate. Reviews were performed by an investigator together with a pharmacist. First, to evaluate the process time-investments of the investigator and the pharmacist were described. Besides, the proportion of reviews in which a client and/or his legal representative participated was calculated as well as the proportion of professional caregivers that participated. Second, to evaluate the identification of drug-related problems using STRIP, the proportion of clients with at least one drug-related problem was calculated. Mean time investment was 130 minutes for the investigator and 90 minutes for the pharmacist. The client and/or a legal representatives were present during 25 of 27 reviews (93%). All 27 professional caregivers (100%) were involved. For every client included at least one drug related problem was identified. In total 127 drug-related problems were detected, mainly potentially inappropriate or unnecessary drugs. After six months, 15.7% of the interventions were actually implemented. Medication review using STRIP seems feasible in adults with an ID and identifies drug related problems. However, in this pilot study the implementation rate of suggested interventions was low. To improve the implementation rate, the treating physician should be involved in the review process. Besides, specific adaptations to STRIP to address drug related problems specific for this population are required. (c) 2016 Elsevier Ltd. All rights reserved.

Background Antipsychotics are frequently and often long-term used for challenging behaviour in persons with intellectual disability (ID), but the evidence base for this is meagre. As these agents may cause harmful side effects, discontinuation should be considered. Previous studies regarding discontinuation of long-term used antipsychotics mostly were uncontrolled and involved small numbers. The primary objective was to investigate the effects of controlled discontinuation of antipsychotics prescribed for challenging behaviour. Secondary objectives were to compare the results of two discontinuation time schedules, to compare groups of participants who had and had not achieved complete discontinuation, and to identify patient and medication characteristics that might predict the outcomes. Our hypothesis was that discontinuation of antipsychotics used for behavioural symptoms would not lead to worsening in behaviour. Methods This was a multi-centre parallel-group study comparing two discontinuation schedules of 14 and 28 weeks. Allocation to the two discontinuation schedules took place in a 1:1 ratio. Antipsychotics were tapered off every 2 or 4 weeks with approximately 12.5% of the initial dosage. Follow-up was 12 weeks after the scheduled complete discontinuation, that is, 26 or 40 weeks after the first dose reduction, respectively. Discontinuation was stopped in case of significant behavioural worsening. Participants were 98 residents with ID of three care

Background In the Netherlands, no self-report screening questionnaire for anxiety in people with intellectual disabilities (ID) was available yet. Therefore, we have translated the Glasgow Anxiety Scale for people with an Intellectual Disability (GAS-ID) into Dutch and studied its reliability and validity in adults with borderline, mild or moderate ID. Method Test–retest reliability was studied in 66 participants, convergent validity against the Anxiety sub-scale of the Hospital, Anxiety and Depression Scale (HADS-A) in 96, and criterion validity against psychiatric diagnosis in 195 participants. Results Internal consistency was α = 0.86 and test–retest reliability ICC = 0.89 (95% CI: 0.82–0.93). Correlation with the HADS-A was r = 0.61 (95% CI: 0.47–0.72); sensitivity was 83.9% (95% CI: 72.2–91.2) and specificity was 51.8% (95% CI: 43.6–59.9) using a cut-off score of 17. Missed diagnoses (false-negatives) were mostly specific phobias. Of the false-positives, 38 of 66 participants (58%) had another psychiatric diagnosis. Conclusions The Dutch version of the GAS-ID is a reliable screening instrument with satisfactory sensitivity, but moderate specificity for anxiety disorders. Although specificity for anxiety disorders is only moderate, high scores appear to be indicative of other psychiatric problems too, justifying referral for psychiatric assessment of false-positives.

Objective The objective of this article is to study which factors are associated with depression and anxiety in older adults with intellectual disabilities (ID). Methods Depressive and anxiety symptoms were studied in 990 participants with borderline to profound ID, aged ≥ 50 years, using self-report and informant-report screening questionnaires. In 290 participants, major depression and anxiety disorders were assessed with a standardised psychiatric interview. Associations with personal, medical and psychosocial factors, which were collected through questionnaires and participants' medical and psychological records, were studied using multiple logistic regression analysis. Results Increased depressive symptoms were positively associated with increased anxiety symptoms, number of life events during the past year and chronic diseases (heart failure, stroke, chronic obstructive pulmonary disease, coronary artery disease, diabetes mellitus and malignity in the previous 5 years) and negatively with instrumental activities of daily living (IADL) abilities. Major depression was positively associated with chronic diseases and negatively with IADL abilities. Increased anxiety symptoms were positively associated with borderline or mild ID and increased depressive symptoms and negatively associated with Down syndrome, epilepsy and social contacts. Anxiety disorders showed no significant associations. Conclusions To develop effective prevention and treatment policies, factors associated with depression and anxiety in older adults with ID should be further examined in longitudinal research. Copyright © 2012 John Wiley & Sons, Ltd.

Background Physical fitness is relevant for wellbeing and health, but knowledge on the feasibility and reliability of instruments to measure physical fitness for older adults with intellectual disability is lacking.Methods Feasibility and test-retest reliability of a physical fitness test battery (Box and Block Test, Response Time Test, walking speed, grip strength, 30-s chair stand, 10-m Incremental Shuttle Walking Test and the Extended Modified Back-Saver Sit-and-Reach Test) were investigated in older adults with ID in a convenience sample of 36 older adults (mean 65.9, range 50-89 years), with differing levels of intellectual disability and mobility.Results and conclusion All tests to measure physical fitness in older adults with ID had moderate to excellent feasibility and had sufficient test-retest reliability (ICCs .63-.96). No statistically significant learning effects were found.

Background Epidemiological information on age-related cardiovascular disease in people with intellectual disability (ID) is scarce and inconclusive. We compared prevalence and incidence of cerebrovascular accident and myocardial infarction over age 50 in a residential population with ID to that in a general practice population. Method A retrospective descriptive study was conducted, based on medical records of 510 persons with ID and 823 general practice patients, aged 50 years and over. Results Lifetime prevalences after age 50 were similar in both populations: 5.7% (95% CI 4.0–8.1%) in persons with ID and 4.4% (95% CI 3.1–6.0%) in the general population (Pearson chi-square 1.17, P = 0.279). Incidence per gender was similar between cohorts (men P = 0.86, women P = 0.36). There was no difference in incidence rates between the ID and control groups [relative risk = 1.5 (95% CI 0.9–2.4)]. Conclusion Prevalence and incidence of myocardial infarction and cerebrovascular accident in ageing persons with ID do not appear different from those in the general population. It has to be taken into account that underdiagnosis and selection bias towards a more disabled group may have lead to underestimation of age-related cardiovascular morbidity, and the higher age and underrepresentation of Down syndrome to overestimation.

It is generally assumed that children with intellectual disabilities (ID) have an increased risk of impaired visual information processing due to brain damage or brain development disorder. So far little evidence has been presented to support this assumption. Abnormal visual orienting behavior is a sensitive tool to evaluate impaired visual information processing. Therefore, the main objective of this study was to investigate possible correlations between the children's characteristics (age, gender, level of ID, mobility, gestational age, cerebral palsy, Down syndrome, visual acuity, strabismus, nystagmus, and epilepsy), and abnormal visual orienting behavior. We quantified data on visual orienting behavior, in terms of visual processing time and ocular motor fixations, in 88 children with ID aged 4-14 years. These visual parameters were combined with data collected from the children's medical records (predictors) and were put in a Pearson bivariate correlation analysis. A predictor was included for multiple regression analysis if the Pearson's correlation coefficient had a level of significance of p < 0.05. As shown by multiple regression analysis, age, level of ID, and Down syndrome significantly affected visual processing time. Mobility, strabismus, and nystagmus significantly affected fixation quality. Using a systematic approach, we confirmed the hypothesis that children with ID have an increased risk of impaired visual information processing which is related to a low IQ. (C) 2012 Elsevier Ltd. All rights reserved.

OBJECTIVES To obtain first insight into prevalence and correlates of frailty in older people with intellectual disability (ID). DESIGN Population-based cross-sectional study in persons using formal ID services. SETTING Three Dutch care provider services. PARTICIPANTS Eight hundred forty-eight individuals with borderline to profound ID aged 50 and older participating in the Healthy Ageing and Intellectual Disability (HA-ID) Study. MEASUREMENTS All participants underwent an extensive health examination. Frailty was diagnosed according to Cardiovascular Health Study criteria. Associations between frailty and participant characteristics were investigated using multivariate logistic regression analysis. RESULTS Prevalence of frailty was 11% at age 50 to 64 and 18% at age 65 and older. Age, Down syndrome, dementia, motor disability, and severe ID were significantly associated with frailty, but only motor disability had a unique association with frailty. In a regression model with these variables, 25% of the variance of frailty was explained. CONCLUSION At age 50 to 64, prevalence of frailty is as high as in the general population aged 65 and older (79%), with a further increase after the age of 65. Motor disability only partially explains frailty. Future studies should address health outcomes, causes, and prevention of frailty in this population. J Am Geriatr Soc 60:934-938, 2012.

This study measures physical activity levels in a representative population-based sample of older adults (aged >= 50 years) with intellectual disabilities. For this, the steps/day of all 1050 participants of the Healthy Ageing and Intellectual Disabilities study (HA-ID; a study conducted among three Dutch healthcare providers in 2009-2010), were measured with a pedometer. Largely due to physical limitations (n = 103), walking speed

Background: Accurate prediction equations for estimating body composition and total energy expenditure (TEE) in children with severe neurologic impairment and intellectual disability are currently lacking. Objective: The objective was to develop group-specific equations to predict body composition by using skinfold-thickness measurements and bioelectrical impedance analysis (BIA) and to predict TEE by using data on mobility, epilepsy, and muscle tone. Design: Measures of body composition with the use of skinfold-thickness measurements (percentage of body fat) and BIA (total body water) were compared with those from isotope dilution (reference method) by using intraclass correlation coefficients (ICCs) and Bland and Altman limits of agreement analyses. With the use of the same methods, the outcomes of cerebral palsy-specific TEE equations were compared with those of the doubly labeled water method (reference method). Group-specific regression equations were developed by using forward-stepwise-multiple-correlation-regression analyses. Results: Sixty-one children with a mean (+/- SD) age of 10.1 +/- 4.3 y (32 boys) were studied. A new equation based on the sum of 4 skinfold-thickness measurements did not improve agreement (n = 49; ICC = 0.61), whereas the newly developed BIA equation-which includes tibia length as an alternative for standing height-did improve agreement (n = 61; ICC = 0.96, SEE = 1.7 kg, R(2) = 0.92). The newly developed TEE equation, which uses body composition, performed better (n = 52; ICC = 0.87, SEE = 180 kcal, R(2) = 0.77) than did the equation of Schofield (n = 52; ICC = 0.82, SEE = 207 kcal, R(2) = 0.69). Conclusions: Current cerebral palsy-specific equations for measuring body composition and energy expenditure are inaccurate. BIA is more accurate at assessing nutritional status in this population than is the measurement of skinfold thickness. The newly developed TEE equation, which uses body composition, provides a reasonable estimate of energy expenditure in these children despite its variability. Am J Clin Nutr 2011;94:759-66.

Background The aim of this study was to explore the use of actigraphy to investigate sleep problems in a convenience sample of clients of Dutch intellectual disability (ID) care providers. Based on data obtained in a large multi-centre study on healthy ageing in people with ID, research questions were: ‘To what degree are actigraphic measurements successful in this population?’ and ‘What is the influence of different sensitivity settings of the Actiwatch Sleep Analysis software on the distribution of sleep variables in this group?’ Methods Data were collected in a cross-sectional descriptive study design. We included 563 participants, aged 50 years or older, with borderline to profound ID. Sleep-wake data were measured continuously during 14 days and nights using the Actiwatch AW7. A complete measurement of at least 7 days and nights, including at least one weekend day, was considered successful. Objective variables of sleep were analysed using different sensitivity settings of the Actiwatch AW7 Sleep Analysis software. Results In 200 participants (35.5%), a successful measurement was obtained. Unsuccessful measurements were caused primarily by problems with wearing the device and incomplete information on bed time and get up time. Of 382 participants who started wearing the Actiwatch, 354 (92.3%) wore it for at least 7 days. Application of different sensitivity settings of the Sleep Analysis software resulted in clear differences of all sleep parameters. Conclusions Further research is needed into the validity of objective sleep parameters, as measured with the Actiwatch, for screening and epidemiological research in older people with ID. It needs to be investigated which sensitivity setting of the Actiwatch gives most valid results in this specific group, whereas reference data on sleep parameters and cut-off values are to be obtained.