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Study Healthy Ageing and Intellectual Disabilities: recruitment and design

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... Deze studie maakt deel uit van het onderzoek 'Gezond OUDer met een verstandelijke beperking' (GOUD), een observationele studie naar de gezondheid van ouderen (50 jaar en ouder) met een verstandelijke beperking [19] (december 2008-Juli 2010). Deelnemers werden geworven bij drie zorgaanbieders (Ipse de Bruggen, Abrona en Amarant) die gespecialiseerde ondersteuning leveren aan mensen met een verstandelijke beperking, variërend van ambulante ondersteuning of dagbesteding tot woonbegeleiding met intensieve zorg en begeleiding. ...
... De baselinemetingen van het GOUD onderzoek werden uitgevoerd binnen drie thema's (1) Lichamelijke activiteit en Fitheid, (2) Voeding en Voedingstoestand en (3) Depressie en Angst. Gedetailleerde informatie over de studieopzet en diagnostische methoden is elders gepubliceerd [19]. ...
... Tevens is er een selectie bias in de studiepopulatie van het GOUD onderzoek, waardoor de resultaten mogelijk niet geheel representatief zijn voor de volledige populatie ouderen met een verstandelijke beperking. De studiepopulatie bevatte geen ouderen met een verstandelijke beperking die geen geregistreerde vorm van zorg of ondersteuning ontvingen, en ouderen die alleen een ambulante zorg of dagbesteding ontvingen waren ondervertegenwoordigd [19]. Met name de bevindingen van de relatief kleine groep mensen die zwakbegaafd zijn, zijn mogelijk niet representatief voor de gehele groep mensen die zwakbegaafd zijn in Nederland, die mogelijk minder zorg en ondersteuning ontvangen dan de groep deelnemers in dit onderzoek. ...
Door hervormingen van het zorgstelsel is een deel van de mensen met een verstandelijke beperking (VB) nu aangewezen op de Wet Maatschappelijke Ondersteuning (de gemeente). Kennis over hun zelfredzaamheid, en de afname hiervan tijdens het ouder worden is belangrijk om de zorgverlening voor deze groep goed in te richten. Daarom richt deze studie zich op de achteruitgang in zelfredzaamheid en de relatie met overlijden bij ouderen met een VB (≥50 jaar; n = 703). Zelfredzaamheid werd gedefinieerd als basale en instrumentele activiteiten van het dagelijks leven (ADL en IADL) en mobiliteit (zelfstandig kunnen lopen of niet). Van de deelnemers ging 55 % achteruit in hun ADL, 42 % in IADL, en 38 % in mobiliteit. Het risico op achteruitgang bleek groter bij een hogere leeftijd en een ernstigere VB, maar ook deelnemers met een lichte VB gingen 39 % achteruit in ADL, 55 % in IADL en 27 % in mobiliteit. Een slechtere zelfredzaamheid en mobiliteit waren een sterke voorspeller voor overlijden. Deze grootschalige studie laat een duidelijke achteruitgang zien in de zelfredzaamheid van ouderen met een VB in 3 jaar tijd. Partijen verantwoordelijk voor de zorg voor mensen met een VB moeten bedacht zijn op achteruitgang en zoveel mogelijk inzetten op behoud van de zelfredzaamheid.
... The HA-ID study included individuals aged 50 years and older. (49,56) Most of the studies using data from the HA-ID cohort reported a mean age of approximately 62 years (SD = 8 years). (39,42,43,46,47,51) In the articles from the POMONA II project, 190 adults over the age of 18 years were included (mean = 41 years; range =18-76 years). ...
... All studies included both sexes in analyses. Approximately 50-52% of the HA-ID cohort, (56) and the various cohort subsets, (39,(42)(43)(44)(45)(46)(47)(48)(49)(50)(51) were men. Similarly, 52% of the sample of individuals in the Austrian studies were men. ...
... (63,70) Individuals with IDD often have lifelong conditions and it is the deterioration, not the presence, of these conditions that indicate worsening well-being. (49,56) In the literature on the general aging population, upwards of 20 unique measures of frailty exist; (13,21) however, variations of two instruments (i.e., the frailty phenotype and the frailty index) are most frequently found in the literature. Given the desire for a validated and multi-item measure applicable to adults with IDD, both the frailty phenotype of Fried et al. (14) and the "accumulation of deficit" frailty indices of Rockwood et al. (6) have been studied in this population. ...
Article
Background Individuals with intellectual and developmental disabilities (IDD) are both living longer than in previous generations and experiencing premature aging. Improved understanding of frailty in this aging population may inform community supports and avoid negative outcomes. Methods The objective of this study was to review the literature on frailty and IDD and determine areas for future research and application. The methodological framework for a scoping review as developed by H. Arksey and L. O’Malley was applied to identify and select original studies published since 2000. Results Seventeen studies were identified; these were based on the work of researchers from four research programs. The studies utilized six measures of frailty, including two frailty indices, the VFQ-ID(-R), the frailty phenotype, and the frailty marker. Frailty was equally studied as an outcome and as predictor for other outcomes (e.g., mobility, falls, care intensity, institutionalization, and survival). Conclusions There is evidence of a growing interest in the measurement of frailty in aging adults with IDD. As in the general population, frailty in this group is associated with many negative outcomes. While a few measures have emerged, more work is required to replicate results, validate tools, and test the feasibility of applying frailty measures in practice and to inform policy.
... All 2150 clients with ID (aged !50 years) in the three organisations providing care were invited to participate, resulting in a near-representative sample of 1050 clients (specifically, an underrepresentation of the most independent living clients). Details on recruitment, consent procedures and representativeness of the sample, as well as diagnostic methods, have been published elsewhere (Hilgenkamp et al., 2011 ...
... Of the 1050 participants in the HA-ID study (Hilgenkamp et al., 2011), only 257 (24.5%) had a successful measurement with the pedometer. Fig. 1 shows the progress of participants through study, and data on drop-outs. ...
... The strength of this study is the large and near-representative study population, objective measurement of physical activity, and the extensive analysis of non-participants. Based on the considerable investment in information, communication and motivation strategies at the start of the HA-ID study (Hilgenkamp et al., 2011), together with support from the management of the care organisations involved, in our opinion this is the best obtainable result. Only the use of equipment that can reliably measure walking speeds of less than 3.2 km/h, such as the Stepwatch (Foster et al., 2005), might provide even more complete information. ...
... This study was part of the 'Healthy aging and intellectual disabilities' study (HA-ID) (Hilgenkamp et al., 2011). This observational study collected information on the general health status of older people with ID using formal care in the Netherlands. ...
... The Medical Ethics Committee of the Erasmus Medical Center Rotterdam (MEC-2008-234) and the ethics committees of the participating care organizations approved this study. Details about recruitment, design, inclusion criteria, and representativeness of the HA-ID study have been published elsewhere (Hilgenkamp et al., 2011). Three years after baseline, follow-up data were collected between February 2012 and August 2013. ...
... Details about the baseline data collection have been described elsewhere (Hilgenkamp et al., 2011). In short, baseline characteristics were retrieved from the administrative systems of the care organizations. ...
Article
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. Copyright © 2014 Elsevier Ltd. All rights reserved.
... This study was part of the large cross-sectional study 'Healthy Ageing in people with Intellectual Disability' (HA-ID). Details on the design, recruitment, and diagnostic methods are already published (Hilgenkamp, Bastiaanse, et al. 2011). ...
... 50 years receiving formal ID care, with a slight overrepresentation of women, and a slight underrepresentation of individuals living independently and individuals aged ! 80 years (Hilgenkamp, Bastiaanse, et al. 2011). ...
... Physical activity was assessed with pedometers (NL-1000, New Lifestyles, Missouri, USA) worn for at least four days (Hilgenkamp, Bastiaanse, et al. 2011;Hilgenkamp, Van Wijck, & Evenhuis, 2011b). BMI was calculated by weight divided by squared height (World Health Organization, 1995). ...
Article
Although osteoporosis is a progressive bone disease leading to increased risk of fracture, it has rarely been investigated on a large scale in older people with intellectual disabilities (ID). In this study, 768 persons with ID (aged≥50 years) were measured with quantitative ultrasound to determine the prevalence of low bone quality. The association of low bone quality with patient characteristics, mobility, physical activity, body mass index (BMI), prior fractures, anticonvulsant drug use, intake of calcium, and vitamin D3 levels was also investigated. The prevalence of low bone quality was 43.9%. Low bone quality was positively associated with female gender, age, more severe level of ID, mobility impairment, and anticonvulsant drug use, and negatively with BMI. In clinical practice, people with ID who are at risk for low bone quality should periodically be screened for osteoporosis and be given advice about nutritional supplements and appropriate lifestyle.
... Two day-activity centres with reorganization problems or substantial personnel problems are excluded. Based on earlier research, we expect to obtain informed consent for about 50% of the participants [31]. ...
... Our primary outcome measure is physical activity, defined as steps per day. We have data of seniors with a mild or moderate ID from the pilot of the study: "Healthy Ageing with Intellectual Disabilities" (HA-ID) [31] at our disposal (n = 37), in which we found a mean physical activity level of 5480 steps per day (SD 2146). With a power of 80% to detect a difference of 1073 steps (effect size 0.5) and a type I error of 0.10, 60 seniors in both the control group and the participation group are required. ...
... Secondary outcome measurements include: muscle strength, balance, walking speed, blood pressure, aerobic capacity, weight, waist circumference, serum glucose, serum cholesterol, mobility, daily living skills, depressive symptoms and functional deterioration. Measurement instruments that are selected in the epidemiological study HA-ID and that were proven to be reliable among people with ID [31] are used for data collection. ...
Article
This paper describes the results of the process evaluation of a physical activity programme for people with intellectual disabilities (ID), including information about the concepts 'fidelity', 'dose delivered', 'satisfaction' and 'context'. Qualitative and quantitative methods among participants and programme leaders were used. The programme was well accepted, feasible and applicable to ageing people with ID. It was successfully implemented in terms of fidelity and dose delivered, although differences between day-activity centres were observed. The hampering factors that are revealed in this study and the facilitating activities that were part of the implementation plan may be used by care provider services for (ageing) people with ID and other groups of people with cognitive and/or physical deficits, such as frail elderly people or people with dementia when developing and or preparing implementation of health promotion programmes.
... The Medical Ethics Committee of the Erasmus MC, University Medical Center Rotterdam (MEC-2008-234) and the ethics committees of the participating care organisations approved this study. Details about recruitment, design, inclusion criteria and representativeness of the HA-ID study have been published elsewhere (Hilgenkamp et al. 2011). ...
... For those not able to make this decision, the legal representatives were approached. Written informed consent was provided for 1050 clients, forming a nearly representative study population for the Dutch population of older adults with ID aged 50 years and over using formal support or care (Hilgenkamp et al. 2011). ...
Article
Full-text available
Background There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs. Method This study was part of the longitudinal ‘Healthy Ageing and Intellectual Disability’ study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival. Results Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001). Conclusion The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.
... Most of the participants of the HA-ID study (94.2%) resided in a group home for people with ID where they receive care and/or support. An extensive description of the design, recruitment and measurements has been presented elsewhere [19]. The Medical Ethical Committee of the Erasmus MC provided ethical approval of the study (MEC 2008e234). ...
... The sleep-wake rhythms and sleep were measured with valid and reliable measurements for measuring sleep. The findings must be generalized with caution as the study sample is almost representative of all elderly persons with ID receiving care in the Netherlands [19]. ...
Article
Background Sleep problems are common in people with intellectual disabilities (ID), but the knowledge on the natural course of sleep-wake rhythms and sleep problems in elderly persons with ID is limited. In the current study, objectively measured sleep-wake rhythms and the prevalence and severity of sleep problems of elderly persons with ID was compared to that of healthy elderly persons from a large representative sample from the general population. Methods Actigraphy data of 501 elderly persons with ID (age 62.02 ± 8.02 years, 48% female) from the Healthy Ageing and Intellectual Disabilities study was compared to the data of 1734 elderly persons from the general population (age 62.24 ± 9.34 years, 53% female) from the Rotterdam Study. Main outcome variables were Interdaily stability (IS) and Intradaily variablitiy (IV), total sleep time (TST), Waking after sleep onset (WASO), Short sleep (TST<6 h), Night waking (WASO >90 min). Results Elderly persons with ID had less stable sleep wake rhythms than elderly persons from the general population (IS = 0.70 ± 0.17, vs 0.80 ± 0.10 z = −8.00). Their sleep-wake rhythm was also more fragmented (IV = 0.56 ± 0.26 vs 0.42 ± 0.13 respectively, z = 8.00). Elderly persons with ID slept on average 60.09 min longer than elderly persons from the general population, and lay awake 48.28 min longer after sleep onset. Short sleep in elderly persons with ID was less prevalent (20.7% vs 30.2%) but more severe (TST in Short sleep; 5.13 ± 0.80 h vs 5.39 ± 0.50 h, z = −2.76) then in elderly persons from the general population. Night waking was more prevalent (63.0% vs 17.7%) and more severe in elderly persons with ID (WASO in Night waking; 150.39 ± 54.72 min vs 111.60 ± 17.95 min, z = 7.06). Conclusion The differences in sleep-wake rhythms, prevalence and severity of sleep problems between elderly persons with and without ID are marked and possibly explained by medical, psychiatric conditions and lifestyle in elderly persons with ID. Better understanding of sleep in elderly with ID is needed to improve the quality of sleep in this population and to diminish health problems related to a disruption of sleep.
... Evidence indicates that aging among most adults with IDD may not be representative of healthy aging expectations (Hilgenkamp et al., 2011). Although most adults with IDD have minimal life-threatening co-conditions, some Downloaded from https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnaa192/5998115 by GSA Society Access user on 26 August 2021 have severe co-conditions that may compromise health and longevity (Reynolds et al., 2019). ...
... Many interventions generally only cover one or two healthy aging domains, mostly physical capabilities, and metabolic and physiological health. Health characteristics measures for older adults with IDD remain underdeveloped worldwide (Hilgenkamp et al., 2011). Thus, there is a need for health promotion interventions that would be more comprehensive, and which would serve to reduce these disparities and increase self-awareness of healthy living practices. ...
Article
Background and Objectives There is a lack of information on intervention strategies employed for health promotion and disease prevention for older adults with intellectual and developmental disabilities (IDD), who usually experience poorer health compared to their peers without IDD. We carried out the first systematic review to scrutinize the impact of intrinsic factors (e.g., cognitive, mental, and physical health, etc.), on health status of older adults with IDD. Research Design and Methods To assess the efficacy of such interventions, we examined 23 articles including prospective ‘healthy aging’ interventions designed for adults with IDD. Searches were carried out in the databases Web of Science; Scielo; PsycINFO in April 2020. Articles were organized in thematic areas: (1) Physical activity and health nutrition (n=10); (2) Health education and health screening (n=6); (3) Social inclusion and community participation (n=3); and (4) Multi-components (n=4). Except for five RCT studies, the designs were mainly non-randomized, involving small sample sizes (Nrange = 8 to 379 participants), and lacking follow up. Results The studies included 2,398 men and women with IDD (ranging in age from 18 to 86 years [mean age: 44.3 yrs.]). Overall, intervention outcomes were mostly positive, however some negative outcomes were reported. Discussion and Implications In brief, healthy aging interventions for people with IDD remain scarce, incipient, and sporadic. We recommend that more attention needs to be given to active health promotion with people with IDD as a program practice among organizations and as a focal public policy among governments.
... Of these, 1,050 clients or legal representatives provided informed consent, resulting in a near-representative sample. More details about the study are described elsewhere (Hilgenkamp et al., 2011). Participants of whom at least one obesity measurement was available were included in this study. ...
... However, there are some limitations that need to be taken into account. The HA-ID study had a near-representative study sample, but adults with no or very little registered support were underrepresented(Hilgenkamp et al., 2011). The 47 deregistered participants were significantly younger, which could have been selective and related to time of death, causing a selective bias. ...
Article
Full-text available
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). Alsl-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.
... Of these, 1,050 clients or legal representatives provided informed consent, resulting in a near-representative sample. More details about the study are described elsewhere (Hilgenkamp et al., 2011). Participants of whom at least one obesity measurement was available were included in this study. ...
... However, there are some limitations that need to be taken into account. The HA-ID study had a near-representative study sample, but adults with no or very little registered support were underrepresented(Hilgenkamp et al., 2011). The 47 deregistered participants were significantly younger, which could have been selective and related to time of death, causing a selective bias. ...
... Grip strength scores were lower in the IDS-TILDA population than in the Dutch cross-sectional study "Healthy ageing and intellectual disabilities" (HA-ID), which included participants aged 50 years and over living primarily in residential care in the Netherlands (n = 1050, of which 725 completed grip strength assessment) [69,89]. In particular, grip strength scores for women in all age groups were lower than their counterparts in HA-ID (Additional file 3) [69]. ...
... Grip strength scores were lower than findings from The Irish Longitudinal Study on Ageing (TILDA), which follows community-dwelling older adults without ID aged 50 years and over (n = 5897, of which 5819 completed grip strength assessment) [69,89,91] (Additional files 3 and 4). Similarly, TUG scores in IDS-TILDA were also poorer than those observed in older adults without ID. ...
Article
Full-text available
Background Drug Burden Index (DBI), a measure of exposure to medications with anticholinergic and sedative activity, has been associated with poorer physical function in older adults in the general population. While extensive study has been conducted on associations between DBI and physical function in older adults in the general population, little is known about associations in older adults with intellectual disabilities (ID). This is the first study which aims to examine the association between DBI score and its two sub-scores, anticholinergic and sedative burden, with two objective measures of physical performance, grip strength and timed up and go, and a measure of dependency, Barthel Index activities of daily living, in older adults with ID. Methods Data from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) was analysed. Analysis of Covariance (ANCOVA) was used to detect associations and produce adjusted means for the physical function and dependency measures with respect to categorical DBI scores and the anticholinergic and sedative sub-scores (DBA and DBS). Results After adjusting for confounders (age, level of ID, history of falls, comorbidities and number of non-DBI medications, Down syndrome (grip strength only) and gender (timed up and go and Barthel Index)), neither grip strength nor timed up and go were significantly associated with DBI, DBA or DBS score > 0 (p > 0.05). Higher dependency in Barthel Index was associated with DBS exposure (p < 0.001). Conclusions DBI, DBA or DBS scores were not significantly associated with grip strength or timed up and go. This could be as a result of established limitations in physical function in this cohort, long-term exposure to these types of medications or lifelong sedentary lifestyles. Higher dependency in Barthel Index activities of daily living was associated with sedative drug burden, which is an area which can be examined further for review.
... Females were slightly overrepresented. More details about the study design, recruitment and representativeness of the study sample are described elsewhere (Hilgenkamp et al., 2011). Of the total 1,050 participants, 900 participated in the physical fitness assessment. ...
... lation(Hilgenkamp et al., 2011), result may not be representative for the entire population of older adults with intellectual disabilities because of selection bias. First, adults without any form of registered care or support were not included in the HA-ID study, and adults who only visit a day care centre or only receive ambulatory care were underrepresented. ...
Article
Full-text available
Background The very low physical fitness levels of people with intellectual disabilities (ID) may influence their life expectancy. Therefore, we investigated the predictive value of physical fitness for survival in older adults with intellectual disabilities. Method In the Healthy Ageing and Intellectual Disabilities (HA‐ID) study,the physical fitness levels of 900 older adults (≥50 years; 61.5 ± 8.1 years) were measured at baseline. All‐cause mortality was collected over a 5‐year follow‐up period. Cox proportional hazard models were used to determine the association between each physical fitness test and survival, adjusted for age, sex, level of ID, and Down syndrome. Results The physical fitness components that were independently predictive for survival were manual dexterity (HR = 0.96 [0.94–0.98]), visual reaction time (HR = 1.57 [1.28–1.94]), balance (HR = 0.97 [0.95–0.99]), comfortable gait speed (HR = 0.65 [0.54–0.78]), fast gait speed (HR = 0.81 [0.72–0.91]), grip strength (HR = 0.97 [0.94–0.99]) and cardiorespiratory fitness (HR = 0.997 [0.995–0.999]), with a better physical fitness showing a lower mortality risk. Conclusion We showed for the first time that physical fitness was independently associated with survival in older adults with intellectual disabilities. Improving and maintaining physical fitness must become an essential part of care and support for this population.
... For this recommended set, we chose applicability to older adults with ID as a starting point. As epidemiological studies in older adults with ID are still scarce, we mainly used information of the large epidemiological Healthy Ageing and Intellectual Disability (HA-ID) study (n ¼ 1050, aged !50 years) as a source for the selection of tests [29]. In this study, a test was selected for each of the abovementioned physical fitness components based on (1) an extensive literature review of previous literature and (2) expert meetings with physiotherapists and movement experts with experience in working with individuals with ID [26]. ...
... Also, women are slightly overrepresented and 80-84 year-olds are also slightly underrepresented. More detailed information about the representativeness of the HA-ID study sample is published elsewhere [29]. Caution is needed when extrapolating these reference values to other ID subgroups. ...
Article
Full-text available
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 rehabilitation • Individuals 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.
... Recently, the prevalence of multimorbidity and polypharmacy were established in the Healthy Ageing and Intellectual Disabilities Study (HA-ID), a prospective cohort among 1,050 older adults (50 years and over) with ID (borderline to severe levels) in the Netherlands who received care or support from specialized organizations (Hilgenkamp et al., 2011). Multimorbidity (four or more chronic conditions) was found in 47%, and 80% suffered from two or more conditions (Hermans & Evenhuis, 2014), which was similar to results that were found in Dutch nursing homes (including much older non-ID participants) and results from a large Irish study among people with ID, aged 40 years and over (McCarron et al., 2013). ...
... This study was part of the HA-ID study, a large study among 1,050 older adults with ID executed by a consortium of three Dutch care organizations specialized in ID care (Abrona, Ipse de Bruggen, & Amarant) and two university departments (Intellectual Disability Medicine, Erasmus Medical Center at Rotterdam; and the Center for Human Movement Sciences, University Medical Center at Groningen). Details about the selection procedure, representativeness of the sample, and baseline measurements have been described elsewhere (Hilgenkamp et al., 2011). Briefly, all clients aged 50 years and over receiving formal care or support from one of the participating care organizations were invited to participate (n ¼ 2150). ...
Article
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.
... This was a near-representative sample of older adults with ID receiving formal care in the Netherlands, with an underrepresentation of 80to 84-year-olds and a slight overrepresentation of women. A more detailed description of the study design, recruitment, and representativeness of the sample has been published elsewhere (Hilgenkamp et al., 2011). ...
... First, despite our nearly representative study sample of older adults with ID, there might have been selection bias when determining the cause-specific mortality. Older adults with borderline or mild levels of ID who do not use any form of formal care have not been included in this cohort (Hilgenkamp, et al., 2011). Additionally, we were only able to include the medical files of participants who received care from an IDphysician; these participants had more severe levels of ID and more often had multimorbidity than those receiving care from a general practitioner, and a higher percentage was female (Table 2). ...
Article
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%).
... This study addressed the health of 1050 older people with ID in the Netherlands. Details about the recruitment and selection process have been described elsewhere (Hilgenkamp et al. 2011). Briefly, the study sample consisted of clients, aged 50 years and over, from three Dutch care provider services offering a broad spectrum of care and support to people with ID. ...
... First, although the population was near-representative, older people with ID using specialized support, living independently or with relatives were slightly underrepresented in the HA-ID study. Because of the high correlation between frailty and more severe ID, this underrepresentation might have caused slightly higher prevalence of frailty (Hilgenkamp et al. 2011). Second, we did not take into account time and costs as feasibility aspects. ...
Article
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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.
... They are also at risk of agerelated mental disorders, dementia and physical health problems (Sinai et al. 2012; Torr and Davis 2007 ), and staff responses to age-related health changes of people with ID (Webber et al. 2010). Although the life expectancy of adults with ID is lengthening and approaching that of adults without ID, daily practice indicates that this aging is relatively often not a healthy aging (Hilgenkamp et al. 2011a, b). Little emphasis is given to the Bsuccessful^ or Bnormal^ aging of older adults with ID or to systematically identifying needs and characteristics of these people who are now living lives similar to those of everyone else (Janicki and Dalton 1993 ). ...
... All types of professionals involved in care organizations need to be informed and trained in a timely manner, and to enhance cooperation, they need to have input into the organization and planning of the assessments (Hilgenkamp et al. 2011a, b). The training of frontline disability staff is widely accepted as an effective strategy for increasing organizational capacity to contribute to improving the quality of life of people with ID, particularly in terms of issues of health and wellbeing needs, PCP approaches to support, social inclusion and relationships, environmental planning and service options , and the recognized culture of service users (McGhee and Dorsett 2011). ...
Article
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Life expectancy of adults with intellectual disabilities is lengthening toward that of adults without intellectual disabilities, but daily practice indicates that this aging is relatively often not a healthy aging compared with the general population. There is a lack of a concerted response to ensure that the best possible health and social care is provided for persons with intellectual disabilities in later life. Based on current literature reviews, this paper aims to present information regarding challenging issues in aging people with intellectual disabilities such as demographic characteristics in their aging, physical and mental health problems, and their aging health and social service needs. Finally, this paper reviews integrative service interventions for aging people with intellectual disabilities, which include the people-centered and personal choices approach and caregiver and care professional training, and suggests an integrative health promotion approach as future planning to eliminate the health disparities for aging adults with intellectual disabilities.
... This was a three year prospective follow-up study to the 'Healthy ageing and intellectual disabilities' (HA-ID) study. The HA-ID study is an observational study on physical and mental health in older people with ID using formal care in The Netherlands, which included cardiovascular disease and disease risk factors (Hilgenkamp, Bastiaanse, et al., 2011;Hilgenkamp, Reis, van Wijck, & Evenhuis, 2011). Details about recruitment, design, inclusion criteria and representativeness have been previously published (Hilgenkamp, Bastiaanse, et al., 2011). ...
... The HA-ID study is an observational study on physical and mental health in older people with ID using formal care in The Netherlands, which included cardiovascular disease and disease risk factors (Hilgenkamp, Bastiaanse, et al., 2011;Hilgenkamp, Reis, van Wijck, & Evenhuis, 2011). Details about recruitment, design, inclusion criteria and representativeness have been previously published (Hilgenkamp, Bastiaanse, et al., 2011). All clients of three care organisations from different parts of The Netherlands aged 50 years and over were invited to participate (N = 2322). ...
Article
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.
... This study was part of the 'Healthy aging and intellectual disabilities' study (HA-ID) [10]. In this observational study, information was collected on the general health status of older people with ID using formal care in the Netherlands. ...
... Those capable of understanding the available information signed the consent form themselves. Legal representatives were approached for those not able to make this decision. Details about recruitment, design, inclusion criteria and representativeness have been published elsewhere [10]. The Medical Ethics Committee of the Erasmus Medical Center Rotterdam (MEC-2008-234) and the ethics committees of the participating care organisations approved this study. ...
Article
Introduction: People with intellectual disabilities (ID) are earlier frail than people in the general population. Although this may be explained by lifelong unfavourable social, psychological and clinical causes, underlying physiological pathways might be considered too. Biological measures can help identify pathophysiological pathways. Therefore, we examined the association between frailty and a range of serum markers on inflammation, anaemia, the metabolic system, micronutrients and renal functioning. Methods: Participants (n = 757) with borderline to severe ID (50+) were recruited from three Dutch ID care and support services. Results: Frailty was measured with a frailty index, a measure based on the accumulation of deficits. Linear regression analyses were performed to identify associations between frailty and biochemical measures independent of age, gender, level of ID and the presence of Down syndrome. Frailty appears associated with inflammation (IL-6 and CRP), anaemia, metabolic markers (glucose, cholesterol and albumin) and renal functioning (cystatin-C and creatinine). Discussion: These results are in line with results observed in the general population. Future research needs to investigate the causal relation between biochemical measures and frailty, with a special focus on inflammation and nutrition. Furthermore, the possibility to screen for frailty using biochemical measures needs to be used.
... The HA-ID study is a longitudinal study of older adults (50 years and over) with ID (Hilgenkamp et al., 2011), executed in a consortium of three large formal ID service providers in the Netherlands. These service providers offered low to high level of care and support to people with ID. ...
... Eventually 1050 clients, or their legal representatives, provided informed consent, forming a nearly representative study population for the Dutch population of older adults (aged 50 and above) with ID who use formal care, albeit with a slight underrepresentation of men, people aged 80 and over, and people living independently. A full description of the design, recruitment, representativeness, and diagnostic methods has been published elsewhere (Hilgenkamp et al., 2011). A second wave of measurements was collected 3 years after baseline (between February 2012 and August 2013). ...
Article
Frailty appears to develop earlier and is more severe in people with intellectual disabilities compared to the general population. The high prevalence of frailty may lead to an increase in care intensity and associated health care costs. Therefore a longitudinal observational study was conducted to determine the effect of frailty on care intensity. The association between frailty and care intensity at baseline and follow-up (3 years later) was assessed. Furthermore, the ability of the frailty index to predict an increase in care intensity after 3 years was evaluated. This study was part of the Dutch ‘Healthy aging and intellectual disabilities’ (HA-ID) study. Frailty was measured at baseline with a frailty index that included 51 health-and age-related deficits. For all participants information on care intensity in seven steps was available, based on long term care indications under the Act on Exceptional Medical Expenses (AWBZ) – a law that finances specialized long-term care. 676 participants (50 years and over) with ID were included in the final analysis. In 26% of the participants, care intensity had increased during the follow-up period. Increased care during the follow-up was related to a high frailty index score at baseline, independent of gender, age, level of ID and the presence of Down syndrome (p = 0.003). After exclusion of ADL and IADL items, the frailty index remained significantly related with increasing care intensity during follow-up (p = 0.007). Our results underline that screening instruments for early detection of frailty and effective interventions are required to limit the burden of frailty for individuals and caregivers, but also to limit health care utilization.
... A limiting factor is that our sample might not be representative for all older adults with ID living in care facilities. Compared with a large cohort of older adults with ID [HA-ID study (Hilgenkamp et al. 2011)], our sample was relatively mobile and had a higher prevalence of depressive symptoms [23 vs 17% (Hermans et al. 2013)] and did not include many participants with severe or profound ID. As severe and profound ID co-occurs with severe neurological and physical disabilities that affect sleep too, this might limit the effect of increasing light exposure on sleep in adults with severe to profound ID in comparison with adults with mild to moderate ID. ...
Article
Full-text available
Background: Evidence-based interventions to improve the sleep-wake rhythm, mood and behaviour in older adults with intellectual disabilities (ID) are limited. Increasing light exposure has been shown to be effective in improving the sleep-wake rhythm, mood, and behaviour in other populations. The current study investigates the effect of installing environmental dynamic lighting in common living rooms of care facilities on sleep-wake rhythm, mood, and behaviour in older adults with ID. Methods: A non-randomised, non-concurrent, multiple baseline study was performed from October 2017 to May 2018. Fifty-four participants [mean (SD) age of 63.42 (8.6) years, 65% female] in six care facilities were included. All participants had three baseline measurements (Weeks 1, 5 and 9). Dynamic lighting was installed in Week 10, after which three intervention measurements took place (Weeks 12, 17 and 24). Sleep characteristics and the sleep-wake rhythm were assessed using actigraphy (GENEActiv). Mood was measured with the Anxiety, Depression and Mood Scale (ADAMS) and behaviour with the Aberrant Behaviour Checklist (ABC). Results: Mixed-effect regression analysis showed a worsening of the primary outcome interdaily stability (P = 0.001). This could be attributed to one care facility, whereas interdaily stability did not change in the other care facilities (P = 0.74). Dynamic lighting led to earlier mid-sleep (P = 0.003) and sleep onset (P < .0001) and improved mood as indicated by lower scores on the ADAMS depression (-0.64 SD, P < 0.001) and social avoidance (-0.47 SD, P = 0.004) subscales. The prevalence of screening above cut-off for depression decreased from 23 to 9.8% (OR = .16, P = 0.003). For behaviour, a decrease was seen in hyperactivity (-0.43 SD, P < 0.001), lethargy (-0.35 SD, P = 0.008) and irritability (-0.33 SD, P < .001) as measured with the ABC. No adverse effects were reported. Conclusion: Installing dynamic lighting in common living areas for older adults with ID improved the mood and behaviour of the residents up to 14 weeks after placement. Integrated dynamic lighting is a promising, undemanding and potentially effective addition to improve mood and behaviour in care organisations for people with ID, but does not seem to do so by improving sleep or sleep-wake rhythms.
... This study was part of a multicentre feasibility study of vigorous resistance-exercise training for adults with ID with cardiovascular disease (CVD) risk factors (Weterings et al. 2020a), which was conducted by the 'Healthy Ageing and Intellectual Disabilities' (HA-ID) consortium. This consortium consists of three care provider organisations for people with ID in the Netherlands, Abrona (Huis ter Heide), Ipse de Bruggen (Zoetermeer) and Amarant (Tilburg), and the Chair for Intellectual Disability Medicine of the Erasmus MC, University Medical Center Rotterdam (Hilgenkamp et al. 2011). ...
Article
Full-text available
Background: Muscle strength is both a strong predictor for future negative health outcomes and a prerequisite for physical fitness and daily functioning of adults with ID. Therefore, it is important to be able to monitor the muscle strength of adults with ID over time. The aim of this study is to assess the responsiveness of five field tests that measure muscle strength and endurance (grip strength, hand-held dynamometry of leg extension and arm flexion, 10RM-test of the seated squat and the biceps curl, 30-s chair stand and the 5-times Chair stand) in adults with ID after a 24-week resistance-exercise training (RT) programme. Method: The responsiveness of the five muscle strength and endurance tests was assessed by correlating the change scores of the five tests with the slope of the training progression of specific exercises within the RT-programme, namely, the step up, seated squat, biceps curl and triceps curl. Results: The 10RM-test of the seated squat was significantly correlated with the step up (R = 0.53, P = 0.02) and the seated squat (R = 0.70 P = 0.00). None of change scores on the other tests was significantly correlated with the training progression of the exercises. Conclusion: The 10RM test of the seated squat could potentially be used to evaluate the effects of an RT-programme in adults with ID. Responsiveness of the grip strength, hand held dynamometry, 10RM-test of the biceps curl, 30-s chair stand and the 5-times chair stand could not yet be confirmed.
... 11 Challenging behaviour and prescriptions of psychotropic drugs are reported for many persons with ID. 12,13 There is evidence of a significant level of avoidable suffering due to untreated illnesses. 14,15 People with ID have a significantly lower mean age at death than those without disabilities. 16,17 Results of a retrospective study suggest that older adults with Down syndrome (DS) encounter more relocations and are more likely to have their final placement for end-of-life care in a nursing home; in contrast, adults without DS are subjected to less relocation and remain in the same grouphome setting. ...
Article
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Objectives People with disabilities are underserved in terms of health care and prevention, and special health conditions exist among older people with intellectual disabilities. The Swiss Health Survey only covers people over the age of 15 years living in private households. Therefore, this study aims to assess the health status of older persons living in residential facilities for adults with disabilities. Methods A cross-sectional survey with written questionnaires was conducted in six cantons in Switzerland to capture context factors and the physical health status of persons aged between 50 and 65 years in residential homes in Switzerland. The survey collected data on physical and mental health from 241 persons aged 50–65 years living in residential homes for people with disabilities. This was compared with data from the 2012 Swiss Health Survey comprising a sample of 2261 persons of the same age with chronic morbidities living in their own apartments. Results Regarding their health, 94.1% of the survey respondents rated it as being very good, good or moderate. Although higher limitations on activities of daily living, higher levels of psychological distress and lower energy and vitality were reported by all respondents, a lower level of health issues was assessed than in the sample of persons with chronic morbidities living in their own apartment. Conclusion Low energy and vitality, high limitations on activities of daily living, high psychological distress, high obesity rates and the assessment of health issues and pain should be specifically addressed in residential homes for people with disabilities.
... In this retrospective analysis, we calculated frailty scores using the CFS (Rockwood et al., 2005) and the ID-frailty index (Schoufour et al., 2013) for the original cohort of 982 aging adults with ID (aged 50 years and over) of the HA-ID study (data collected during 2009-15, recruitment and participant characteristics described elsewhere (Hilgenkamp, Bastiaanse, et al., 2011, Schoufour et al., 2013). We used the previously collected baseline data on the ability to perform activities of daily living in the sample to classify the individuals with ID according to the CFS . ...
Article
Full-text available
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.
... The subjects participating in experiment 1 and 3 verbally provided their permission prior to the execution of the study. The informed consent procedure of experiment 2 was based on the work of Hilgenkamp et al. (2011). For the participants who were able to make their own decision regarding consent for participation, information about the study was provided consisting of an introductory letter, an information booklet, and an informed consent form (see Appendix A3). ...
Thesis
Full-text available
Lighting controls in offices are still mainly focused on energy savings. However, focusing on a potential productivity increase of office workers would lead to much higher savings in company costs. A less alert office worker performs a task worse compared to a more alert office worker. This project aimed at developing input for intelligent systems to optimize subjective alertness of office workers. A systematic approach has been developed which comprises of four parts: gathering personal lighting conditions, interpreting personal lighting conditions, identifying predictors of personal lighting conditions, and relating personal lighting conditions to subjective alertness. First, this thesis focused on exploring the advantages and disadvantages of three methods to gather personal lighting conditions: Person-Bound Measurements (PBM), Location-Bound Measurements (LBM), and Location-Bound Estimations (LBE). Second, measured personal lighting conditions were interpreted according to light factors identified to initiate effects beyond vision. Third, multiple predictors were identified to influence personal lighting conditions. And fourth, the relationship between personal lighting conditions and alertness was found to be negligible in two separate field studies. The above-mentioned systematic approach conveys input to be inserted in intelligent systems to optimize alertness of office workers. Such systems would provide recommendations for office workers to adjust their own personal lighting conditions. This type of system may be both energy efficient and practical. The system can be used by companies to support their office workers. The office workers would feel more alert whereas the employers would see productivity gains to help them reducing their company costs.
... In the Healthy Aging and Intellectual Disabilities (HA-ID) study, the physical fitness of older adults with ID (defined as 50 yr and older) has been studied on a wide range of physical fitness components, among which are cardiorespiratory fitness, walking speed, and grip strength (38). Cardiorespiratory fitness was evaluated with the 10-m incremental shuttle walking test, and the test score was the distance covered by the participant during the test. ...
Article
Full-text available
Physical fitness is positively related to health outcomes like morbidity and all-cause mortality, with minimally required cut-off values to generate those health benefits. Individuals with intellectual disabilities exhibit very low fitness levels well below those cut-off values. Our novel hypothesis is that even among very unfit, older adults with intellectual disabilities, small changes in fitness translate to major changes in health.
... Zoetermeer) and Amarant (Tilburg) in collaboration with the Chair for Intellectual Disability Medicine of the Erasmus MC, UniversityMedical Center Rotterdam(Hilgenkamp et al., 2011). ...
Article
Full-text available
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.
... Efforts should also be made to link with longitudinal studies in other countries, such as the National Core Indicators Study and Medicaid studies in the United States of America 56 and the efforts currently underway in Australia 57 and the Netherlands. 58 Over time, cross-sectional studies are becoming more sophisticated in their statistical analyses and ability to consider participants' appraisals of past periods in their lives. Although the quality of recollections will always be an issue, they may be an additional and less time-intensive way to gather data. ...
Technical Report
The purpose of this review is to systematically evaluate the evidence on quality of life outcomes and costs associated with a move from a congregated setting to a community living arrangement for people with intellectual disability. The right to live independently in a place of one’s own choosing is a core value of the United Nations Convention on the Rights of Persons with Disabilities. Ireland is in the process of implementing a new phase in its efforts to reduce the reliance on institutional residential arrangements for people with intellectual disability. In particular, there has been a focus on moving people from what are widely referred to as ‘congregated settings’ (institutions with 10 or more residents) to ‘community living arrangements’ (where each unit contains no more than four residents). The Department of Health in Ireland requested this review to inform Ireland’s ongoing deinstitutionalisation process. Although there is a large body of studies examining quality of life outcomes of residential moves by people with intellectual disability, small samples, a lack of systematic design, incomplete data, and variations in what was measured over different time frames mean that few studies were worthy of inclusion in a systematic review, and even fewer met the criteria for meta-analysis. Nevertheless, this evidence review does offer some support for the hypothesis that moving from an institutional residential setting to a community residential setting is associated with improved quality of life for adults with intellectual disability. There is no clear evidence on the cost-effects of residential moves, and few conclusions can be drawn for people who have highly specialised support needs. There were some findings suggesting that people with severe or profound intellectual disability either experienced a generally improved quality of life or experienced a lack of improvement, but not a deterioration in quality of life, following a move to a community setting. There is a need for longitudinal studies – and agreed standardised variables and measures – that examine adequately sized representative samples of people with intellectual disability where there is the potential to gather baseline (pre-move) data; follow individuals at several time points; examine health-related, community participation, and life satisfaction variables; and control for the effects of changing health and independence needs. Comparison of cost-effects requires measurement from the broadest possible perspective, incorporating both formal (residential, health, and social care, out-of-pocket costs) and informal (unpaid carer) cost domains in ways that illuminate the relationships between specific types of residential settings and associated utilisation. URL: https://www.hrb.ie/publications/publication/quality-of-life-outcomes-and-costs-associated-with-moving-from-congregated-settings-to-community-liv/
... This study consisted of an expert meeting to select appropriate exercises for the RESID, and a pilot study to test the selected exercises for feasibility (Bowen et al., 2009;Thabane et al., 2010). This study was part of the "Healthy Aging and Intellectual Disabilities" consortium; a consort of three care providers for people with intellectual disabilities in the Netherlands, Abrona (Huis ter Heide), Ipse de Bruggen (Zoetermeer) and Amarant (Tilburg) in collaboration with the Chair for Intellectual Disability Medicine of the Erasmus MC, University Medical Centre Rotterdam (Hilgenkamp et al., 2011). ...
Article
Full-text available
Background Resistance training has beneficial effects on fitness levels, cardiovascular disease risk, risk of sarcopenia and on performing activities of daily living. The focus of this study is to design a total body resistance exercise set for adults with intellectual disabilities (RESID) with minimal equipment required and to test its feasibility. Method The RESID was selected in an expert meeting, and its feasibility was determined in a cross‐sectional pilot study. The feasibility was determined with completion rate, correct execution of exercises and the participant's experience. Results The expert group (n = 7) selected seven exercises for the RESID. The participants (N = 11) performed the RESID twice during regular sports classes. Completion rate and correctness were excellent for all exercises. The participants did not experience any major problems with the RESID. Conclusions The RESID is feasible for use in different training settings. A physiotherapist or fitness instructor is required to supervise the training sessions.
... We acknowledge that PALLI is developed as a tool for proxies, who do not always get it right in people with severe communication problems. Still, proxy measurements on health in people with intellectual disabilities are common, are feasible and provide meaningful results when the professionals know the person well (e.g., Hilgenkamp et al., 2011). ...
Article
Background Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. Method We used a five‐stage mixed‐methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5–6 months. Results The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. Conclusions PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.
... Therefore, managers and staff were informed and motivated by educational sessions and written information prior to the start of the study. In the past, this approach led to good results (Hilgenkamp et al., 2011). Furthermore, clients are not able to sign up themselves because of cognitive and verbal impairments. ...
Article
Due to the limited cognitive and communicative abilities of adults with intellectual disabilities (ID), current treatment options for depression are often limited to lifestyle changes and pharmacological treatment. Bright light therapy (BLT) is an effective intervention for both seasonal and non-seasonal depression in the general population. BLT is an inexpensive, easy to carry out intervention with minimal side effects. However, knowledge on its anti-depressant effect in adults with ID is lacking. Obstacles in realizing a controlled intervention study in this particular study population may have contributed to this lack. To study the effect of BLT on depression in this population, it is necessary to successfully execute a multicenter randomized controlled trial (RCT). Therefore, the study protocol and the management of anticipated obstacles regarding this trial are presented.
... A limiting factor is that our sample might not be representative for all older adults with ID living in care facilities. Compared with a large cohort of older adults with ID [HA-ID study (Hilgenkamp et al. 2011)], our sample was relatively mobile and had a higher prevalence of depressive symptoms [23 vs 17% (Hermans et al. 2013)] and did not include many participants with severe or profound ID. As severe and profound ID co-occurs with severe neurological and physical disabilities that affect sleep too, this might limit the effect of increasing light exposure on sleep in adults with severe to profound ID in comparison with adults with mild to moderate ID. ...
Conference Paper
Aims: Sleep problems are observed in 72% of the elderly with intellectual disabilities (Elderly-ID). Little is known about the severity and cause of sleep problems of this population. Two studies are presented. The first study gains insight into the severity of sleep problems by comparing sleep in elderly with intellectual disabilities (HA-ID study) with data on sleep in elderly in the general population (Rotterdam-study). The second study focusses on light exposure in Elderly-ID and the effect on sleep. Too little or badly timed exposure to (day)light causes a disrupted circadian rhythm. It is hypothesized that inadequate exposure to light might be a reason for the frequent sleep problems in elderly-ID. Method: The first study compared sleepdata (Actiwatch) of two epidemiological studies, Ha-ID (n=501) and Rotterdam-study (n=1462). The second study measures light exposure (HOBO-dataloggers) , sleep and sleep problems (Actiwatch 2) in elderly-ID living in a health care facility. Results: Results of both studies are expected in June 2016. Conclusion: Insight into the severity and cause of sleep problems in this population is a first step in prevention of these problems.
... All subjects participating in experiment 1 and 3 provided their written informed consent prior to the execution of the study. The informed consent procedure of experiment 2 was based on work of Hilgenkamp et al. (13). Participants who could make their own decision regarding consent for participation, information consisted of an introductory letter, an information booklet, and a consent form. ...
Article
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Background: The non-image-forming effects of luminous radiation on people with intellectual disabilities or dementia received attention from researchers. Such studies, however, have generally been conducted using disparate methodologies which precludes generalization and reproducibility. Objective: The aim of this study was to determine the practical applicability of measurement devices for studies investigating non-image-forming effects of luminous radiation, specifically for people with intellectual disabilities or dementia. Methods: In three experiments, ten cognitive impaired people and thirty-nine unaffected subjects participated by wearing one or more portable devices. Six devices were assessed in total. Measurement data was accompanied with user experiences obtained from questionnaires, interviews and observations in order to assess the devices on practical and comfort issues. Results: On average, the devices worn by the cognitive impaired subjects were not experienced as annoying or irritating. No significant differences are found between genders and for one of the portable devices significantly less annoyance was reported by the cognitive impaired participants compared to the unaffected group of participants. Innovative solution: The three phases of the research process in towards measuring personal luminous exposures are: selection of the most suitable portable device, application of the assessment method, and the application of the device in the (pilot) study. Conclusions: However, the findings of this study suggest that inaccuracies potentially caused by practical and comfort issues associated with the portable devices need to be considered.
... Waist circumference was measured over the unclothed abdomen at the narrowest point between the costal margin and iliac (de Winter et al. 2011;Hilgenkamp et al. 2011). ...
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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 43 years 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 8 months. 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. The generalised linear model with mixed effects was used to test the programme's effectiveness. Results: Significant effects were found on physical activity, muscle strength, systolic and diastolic blood pressure, serum cholesterol level and cognitive functioning, in favour of the programme's participants. No significant improvements were found on balance, serum glucose, weight, waist circumference, walking speed, mobility, depression or instrumental activities of daily living. Conclusions: The physical activity and fitness programme has established small but significant effects in this sample, but generalising the findings to other settings is difficult due to significant participant dropout. Implementation of evidence-based physical activity programmes among older adults with ID is recommended. Further research is needed to investigate the effectiveness of physical activity on daily life functioning and the development on chronic diseases in the long run.
... Partnering is particularly important in IDD research as recruitment relies extensively on third parties. Hilgenkamp et al. (2011) reported on a very successful third party recruitment strategy whereby they recruited 1050 adults with IDD 50 years of age or older across three health care organizations in the Netherlands (49.7% consent/invited rate). They stated "[I]nvolvement of top and middle management in the entire process and a thorough communication plan (with a focus on key groups such as professional caregivers) proved of paramount importance to effectively organize this kind of large-scale research projects" (p. ...
... In this prospective cross-sectional study, data of participants were collected in two different samples. The majority of the participants, i.e., 201 were recruited from the 'Healthy [ 3 3 _ T D $ D I F F ] ageing and intellectual disabilities' study (HA-ID) executed by a collaboration of three ID care organizations and two university departments in the Netherlands (HA-ID study Hilgenkamp, Bastiaanse, et al., 2011). In addition, 62 participants were recruited from a residential care facility for the profound or severe intellectually and visually disabled in the Netherlands. ...
... This study analysed pooled baseline data from two independent studies of people with ID: Special Olympics Funfitness Spain (n = 801) and the Dutch cross-sectional study 'Healthy aging and intellectual disabilities' (HA-ID; n = 725). For all 1536 adults with ID, details about design, recruitment and representativeness of the sample have been presented elsewhere [21] [22]. ...
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Aim: The aim of this study was to investigate grip strength in a large sample of people with intellectual disabilities, to establish reference values for adults with intellectual disabilities (ID) and compare it to adults without intellectual disability. Methods: This study analysed pooled baseline data from two independent studies for all 1526 adults with ID: Special Olympics Funfitness Spain (n = 801) and the Dutch cross-sectional study 'Healthy aging and intellectual disabilities' (n = 725). Results: The grip strength result of people with ID across gender and age subgroups is presented with CI95% values from higher 25.5-31.0 kg in male younger to lower 4.3-21.6 kg in female older. Conclusion: This study is the first to present grip strength results of a large sample of people with ID from 20-90 years of age. This study provides reference values for people with ID for use in clinical practice.
... First, the results may not be representative for the entire population of older adults with ID because of selection bias; adults with severe or profound ID and wheelchair users were underrepresented in the physical fitness assessment (Hilgenkamp et al., 2012b). In addition, the HA-ID study sample did not include older adults with ID who did not use any form of registered care or support, and older adults with ID that only receive ambulatory care or only visit a day-care center were underrepresented in the sample (Hilgenkamp, Bastiaanse, et al., 2011). Therefore, our results are not generalizable to these groups. ...
Article
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.
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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.
Article
The purpose of this study was to investigate short-term changes of frailty in adults and identify predictors of frailty and disability changes between baseline and the follow-up. A cohort study was conducted in 85 adults with intellectual disability (ID) in southern Taiwan. Variables of frailty phenotype, Barthel Index, fall, comorbidity, and hospitalization were measured at baseline and at a 9-month follow-up. Descriptive statistics, correlations, and generalized linear model technique were used for data analysis. The percentages of frailty and pre-frail conditions were high at baseline. Improvement or deterioration on frailty was noticed in 37.6% of participants. Disability and comorbidity were significant predictors to changes in frailty, and severity of ID and frailty conditions were significant predictors to changes in disability.
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Population ageing, together with urbanisation, has become one of the greatest challenges throughout the world in the 21st century. Approximately one million people turn 60 each month worldwide. By 2050, more than 20 per cent of the global population is predicted to be 60 years old or above. Thus, an increasing need is evident for age-friendly communities, services and structures. Numerous studies on age-friendly cities and communities (AFCCs) have been conducted over the past decade. The large volume literature makes it necessary to figure out key areas and the evolution trends of studies on AFCCs. Therefore, this paper aims to provide a comprehensive review of existing literature pertaining to AFCCs. A total of 231 collected publications are analysed and visualised by CiteSpace . According to the keywords and document co-citation networks that are generated, the foundation, hot topics and domains of AFCC research are grouped. Three major themes, namely the characteristics of AFCCs, the application of the World Health Organization's framework in urban and rural areas worldwide, and the measurement of cities’ and communities’ age-friendliness, are identified. In addition, a roadmap of AFCC research is developed. The results of this research will therefore benefit researchers and practitioners.
Article
Communication research typically involves participant recruitment of individuals with a communication disability. However, such recruitment can be particularly difficult due to the social isolation and communication difficulties that are inherent to this population. As such, the Communication Research Registry (CRR) was established. The current study aimed to: (1) identify the motivations of individuals with a communication disability for joining the CRR and participating in communication research; (2) explore research experiences of CRR members; and (3) determine research areas of importance to CRR members. Answers to these research questions are needed to facilitate research recruitment and positive research experiences for people with communication disability. Online or paper surveys containing a mix of open- and closed-ended questions were completed by 89 adults with a communication disability. Qualitative content analysis of participant responses identified two main themes responsible for motivating adults to join the CRR, including: (1) altruistic motivators; and (2) personal motivators. The majority of participants reported having had positive research experiences through the CRR, and identified a range of potential research areas they would like further investigated. The study findings are not only important for expanding and improving the CRR and research registries more broadly, but are relevant to all communication researchers who endeavour to include individuals with a communication disability in research and facilitate meaningful research experiences. Furthermore, the results offer support for the CRR in addressing barriers to recruitment and facilitating access and inclusion of people with a communication disability in research.
Article
Background: Health care organizations supporting individuals with intellectual disabilities (IDs) carry out a range of interventions to support and improve a healthy lifestyle. However, it is difficult to implement an active and healthy lifestyle into daily support. The presence of numerous intervention components, multiple levels of influence, and the explicit use of theory are factors that are considered to be essential for implementation in practice. A comprehensive written lifestyle policy provides for sustainability of a lifestyle approach. It is unknown to what extent these crucial factors for successful implementation are taken into consideration by health care organizations supporting this population. Aim: To analyze the intervention components, levels of influence, explicit use of theory, and conditions for sustainability of currently used lifestyle interventions within lifestyle approaches aiming at physical activity and nutrition in health care organizations supporting people with ID. Methods: In this descriptive multiple case study of 9 health care organizations, qualitative data of the lifestyle approaches with accompanying interventions and their components were compiled with a newly developed online inventory form. Results: From 9 health care organizations, 59 interventions were included, of which 31% aimed to improve physical activity, 10% nutrition, and 59% a combination of both. Most (49%) interventions aimed at the educational component and less at daily (19%) and generic activities (16%) and the evaluation component (16%). Most interventions targeted individuals with ID and the professionals whereas social levels were underrepresented. Although 52% of the interventions were structurally embedded, only 10 of the 59 interventions were theory-driven. Conclusion: Health care organizations could improve their lifestyle approaches by using an explicit theoretical basis by expanding the current focus of the interventions that primarily concentrate on their clients and professionals toward also targeting the social and external environment as well as the introduction of a written lifestyle policy. This policy should encompass all interventions and should be the responsibility of those in the organization working with individuals with ID. In conclusion, comprehensive, integrated, and theory-driven approaches at multiple levels should be promoted.
Chapter
Increasing life expectancy, shifts to supporting people with intellectual and developmental disabilities in the community, their increased vulnerability to poor health, and the need for greater accountability call for more than occasional studies of aging in this population. Ongoing monitoring of health indicators is feasible in various capacities in different jurisdictions. In this chapter, we first situate the literature about aging with intellectual and developmental disabilities in the context of aging in the general population, and identify key indicators for consideration in health surveillance in older adults with intellectual and developmental disabilities. We then report on a population-based study in Ontario, Canada, which confirms earlier reports of increasing numbers of older adults with intellectual and developmental disabilities, premature aging in this population, and expected trends in use of home care and admission to long-term care. The review concludes with recommendations for future surveillance activities in Ontario and beyond. Concerned researchers should partner with knowledge users/decision-makers to maximize the use of electronic administrative and clinical data available to them. In time, the international research community may identify common indicators and methods thereby generating comparators across systems that can further inform policy development.
Article
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. Copyright © 2015 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.
Article
To analyze the relationship between frailty and survival in older people with intellectual disabilities (IDs). Population-based longitudinal observational study. Three Dutch care provider services. Individuals with borderline to profound ID aged 50 and older (N = 982). A frailty index (FI) including 51 health-related deficits was used to measure frailty. Mean follow-up was 3.3 years. The Cox proportional hazards model was used to evaluate the independent effect of frailty on survival. The discriminative ability of the FI was measured using a receiver operating characteristic (ROC) curve. Greater FI values were associated with greater risk of death, independent of sex, age, level of ID, and Down syndrome. There was a nonlinear increase in risk with increasing FI value. For example, mortality risk was 2.17 times as great (95% confidence interval (CI) = 0.95-4.95) for vulnerable individuals (FI 0.20-0.29) and 19.5 (95% CI = 9.13-41.8) times as great for moderately frail individuals (FI 0.40-0.49) as for relatively fit individuals (FI <0.20). The area under the ROC curve for 3-year survival was 0.78. Although the predictive validity of the FI should be further determined, it was strongly associated with 3-year mortality. Care providers working with people with ID should be able to recognize frail clients and act in an early stage to stop or prevent further decline. © 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.
Article
Aims: Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. Methods: In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. Results: Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. Conclusions: A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies.
Article
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.
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In persons with intellectual disabilities, mental health problems (behavioral problems and psychiatric disorders) are several times more common than in the general population. The more severe the intellectual disability, the more serious are the associated mental health problems. The main objective of this study was to investigate the existing forms of care and mental health problems of adults with intellectual disabilities in Zagreb County and the City of Zagreb, in order to introduce a modern, model-based integrative, developmental approach. The study was conducted in two samples of subjects: (a) 90 adults with intellectual disabilities (aged 21 years) living with their families; and (b) 93 adults with intellectual disabilities (aged 21 years) accommodated in an institution. The measuring instruments used were the scale for developmental-psychiatric diagnosis in persons with intellectual disability (SRPD; Došen, 1996); adaptive behavior scale (AAMD), part II (Igrić, Fulgosi Masnjak, 1991); and a questionnaire on general information developed for this study. Study findings could be summarized as follows: 1) the incidence and type of psychiatric disorders and behavioral problems differed statistically significantly, depending on the degree of intellectual disability; 2) there was a statistically significant difference in the occurrence of psychiatric disorders between adults with intellectual disabilities living with their families and adults with intellectual disabilities accommodated in an institution; 3) there was a statistically significant difference in the occurrence of problem behaviors between adults with intellectual disabilities living with their families and adults with intellectual disabilities accommodated in an institution; 4) there was a statistically significant difference between the existing diagnosis of psychiatric disorders (traditional approach) and diagnosis of psychiatric disorders according to the developmental approach; and 5) in our conditions, there is a predominance of the traditional approach based on psychopharmacotherapy for mental health problems in adults with intellectual disabilities over contemporary (integrative, developmental) approach. In conclusion, our study results suggest that major changes are needed in mental health care for persons with intellectual disabilities. Life in the family is not in all situations and in all subjects a protective factor for the prevention of mental health problems, and there is an urgent need to improve living conditions and choices, along with the support services in the community.
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The aim was to develop a standardised and externally paced field walking test, incorporating an incremental and progressive structure, to assess functional capacity in patients with chronic airways obstruction. The usefulness of two different shuttle walking test protocols was examined in two separate groups of patients. The initial 10 level protocol (group A, n = 10) and a subsequent, modified, 12 level protocol (group B, n = 10) differed in the number of increments and in the speeds of walking. Patients performed three shuttle walking tests one week apart. Then the performance of patients (group C, n = 15) in the six minute walking test was compared with that in the second (modified) shuttle walking test protocol. Heart rate was recorded during all the exercise tests with a short range telemetry device. The 12 level modified protocol provided a measure of functional capacity in patients with a wide range of disability and was reproducible after just one practice walk; the mean difference between trial 2 v 3 was -2.0 (95% CI -21.9 to 17.9) m. There was a significant relation between the distance walked in the six minute walking test and the shuttle walking test (rho = 0.68) but the six minute walking test appeared to overestimate the extent of disability in some patients. The shuttle test provoked a graded cardiovascular response not evident in the six minute test. Moreover, the maximal heart rates attained were significantly higher for the shuttle walking test than for the six minute test. The shuttle walking test constitutes a standardised incremental field walking test that provokes a symptom limited maximal performance. It provides an objective measurement of disability and allows direct comparison of patients' performance.
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Adequate health services are critical to the success of efforts to maintain persons with mental retardation in the community, yet information concerning the health status of this population is in short supply. This paper presents the results of a survey of 333 mentally retarded persons randomly selected from a population of 1,333 such individuals living in community settings. Almost two-thirds had chronic conditions requiring medical intervention. The top five conditions in terms of prevalence were neurologic, ophthalmologic, dermatologic, psychiatric-emotional, and orthopedic. The majority of conditions were being managed appropriately in the community health system. A substantial proportion can be managed by primary care physicians with limited specialty involvement. For almost 60 percent of clients with conditions requiring home treatments on an ongoing basis, however, service gaps were identified. Other problems included the reluctance of some providers to accept Medicaid, and the inability of some clients to cooperate with medical examinations.
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The Box and Block Test, a test of manual dexterity, has been used by occupational therapists and others to evaluate physically handicapped individuals. Because the test lacked normative data for adults, the results of the test have been interpreted subjectively. The purpose of this study was to develop normative data for adults. Test subjects were 628 Normal adults (310 males and 318 females) from the seven-county Milwaukee area. Data on males and females 20 to 94 years old were divided into 12 age groups. Means, standard deviations, standard error, and low and high scores are reported for each five-year age group. These data will enable clinicians to objectively compare a patient's score to a normal population parameter.
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The primary purpose of this study was to establish clinical norms for adults aged 20 to 75+ years on four tests of hand strength. A dynamometer was used to measure grip strength and a pinch gauge to measure tip, key, and palmar pinch. A sample of 310 male and 328 female adults, ages 20 to 94, from the seven-county Milwaukee area were tested using standardized positioning and instructions. Right hand and left hand data were stratified into 12 age groups for both sexes. This stratification provides a means of comparing the score of individual patients to that of normal subjects of the same age and sex. The highest grip strength scores occurred in the 25 to 39 age groups. For tip, key, and palmar pinch the average scores were relatively stable from 20 to 59 years, with a gradual decline from 60 to 79 years. A high correlation was seen between grip strength and age, but a low to moderate correlation between pinch strength and age. The newer pinch gauge used in this study appears to read higher than that used in a previous normative study. Comparison of the average hand strength of right-handed and left-handed subjects showed only minimal differences.
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The objective of this study was to assess the reliability of the Balance Scale. Subjects were chosen from a larger group of 113 elderly residents and 70 stroke patients participating in a psychometric study. Elderly residents were examined at baseline, and at 3, 6 and 9 months, and the stroke patients were evaluated at 2, 4, 6 and 12 weeks post onset. The Cronbach's alphas at each evaluation were greater than 0.83 and 0.97 for the elderly residents and stroke patients respectively, showing strong internal consistency. To assess inter-rater reliability, therapists treating 35 stroke patients were asked to administer the Balance Scale within 24 hours of the independent evaluator. Similarly, caregivers at the Residence were asked to test the elderly residents within one week of the independent evaluator. To assess intra-rater reliability, 18 residents and 6 stroke patients were assessed one week apart by the same rater. The agreement between raters was excellent (ICC = 0.98) as was the consistency within the same rater at two points in time (ICC = 0.97). The results support the use of the Balance Scale in these groups.
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The purpose of this study was to investigate the relationship between performance on the shuttle walking test and maximal oxygen uptake (VO2max) during a conventional treadmill test in patients with chronic airflow limitation. Two different techniques were used to measure oxygen consumption, i.e. conventional Douglas bag techniques (treadmill test) and a portable oxygen consumption meter (shuttle test). Initially, 19 patients performed a shuttle walking test (after one practice walk) and a maximal treadmill walking test, in a randomized, balanced design. Subsequently, 10 patients, (after one practice) completed an unencumbered shuttle walking test and one supporting the portable oxygen consumption meter, in random order. The results of the first experiment revealed a strong relationship between performance during the shuttle walking test and VO2max during the treadmill walking test (r = 0.88). The results of the second experiment consistently demonstrated an incremental increase in oxygen consumption and ventilation in response to the increasing intensity of the shuttle walking test. Again, a strong relationship between VO2max and performance on the shuttle test was demonstrated (r = 0.81). We concluded that the shuttle walking test is a valid field exercise test of functional capacity. Performance on the test relates strongly to VO2max, the traditional indicator of cardiorespiratory capacity.
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The Groningen Activity Restriction Scale (GARS) is a non-disease-specific instrument to measure disability in activities of daily living (ADL) and instrumental activities of daily living (IADL). It was developed in studies of Dutch samples consisting of elderly or chronically ill people. The psychometric properties of the GARS demonstrated in these studies were highly satisfactory. This paper addresses the psychometric properties of the GARS across countries. Data of 623 patients with recently diagnosed rheumatoid arthritis from four European countries were analyzed by means of a principal components analysis and a Mokken scale analysis for polychotomous items. The results of the analyses were highly satisfactory: there was one strong and reliable general factor representing one underlying dimension of disability in ADL and IADL, and there was a clear hierarchical ordering of the items included in the GARS. The validity of the GARS was strongly suggested by the pattern of associations of the GARS with age, sex, and other existing health status measures. The psychometric characteristics of the GARS, which measures disability in ADL and IADL simultaneously, make this instrument very useful for comparative research across countries.
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To address the need for a standardized system to classify the gross motor function of children with cerebral palsy, the authors developed a five-level classification system analogous to the staging and grading systems used in medicine. Nominal group process and Delphi survey consensus methods were used to examine content validity and revise the classification system until consensus among 48 experts (physical therapists, occupational therapists, and developmental pediatricians with expertise in cerebral palsy) was achieved. Interrater reliability (kappa) was 0.55 for children less than 2 years of age and 0.75 for children 2 to 12 years of age. The classification system has application for clinical practice, research, teaching, and administration.
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To compare general practitioners' care of adult patients with learning disability with that of control patients in the same practice. Case-control study of patients and controls by a structured interview study of general practitioners. Avon. 78 adult patients with learning disability and 78 age and sex matched controls--cared for by 62 general practitioners. Number and content of consultations and opinions of the general practitioners. There were more consultations for diseases of the central nervous system and of the skin among the patients than the controls (15 v 3 for central nervous system disease and 15 v 4 skin disease). There were also significantly fewer recordings of blood pressure and cervical cytology tests (34 v 51 for blood pressure and 2 v 18 for cytology). Although more patients were taking drugs affecting the central nervous system (33 v 6), more controls were taking drugs for musculoskeletal complaints (17 v 7). Although adult patients with learning disability consult with their general practitioners at equivalent rates to other patients, they get less preventive care and consult for different types of problems than do other patients. The reasons for these differences in preventive care are not clear. Carers and general practitioners should be informed of these differences to ensure that appropriate care is given.
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In a GP database, 318 people with intellectual disability (ID) appeared to have 2.5 times more health problems than people without ID. This short report deals with the nature of the health problems. Consequences for health care policy are discussed.
Book
This fully revised and expanded second edition brings together findings from research and clinical practice, with comprehensive coverage of the important aspects of physical health in persons with intellectual disability. Professionals involved in the medical and social care and support of persons with intellectual disability should have a broad understanding of the essential range of issues, and therefore this book provides a truly multi-disciplinary perspective, complete with many tables, figures, and illustrations to underline the key points. The reader is updated on ongoing developments in the general population, which will become increasingly more relevant to adults with intellectual disability. This book also acknowledges that the impact on the person and on their carers always needs to be taken into account, with treatment programs established with a multi-faceted team approach in mind. This book is aimed at an international audience of physicians and other allied health personnel concerned about the health and welfare of adults with intellectual disability. It should also be of interest to researchers, administrators, and senior program personnel engaged in this field.
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The Canadian Study of Health and Aging includes 18 centres, and all provinces are represented. The objectives of the study are: to estimate the prevalence of dementias, especially Alzheimer's disease; to study risk factors for Alzheimer's disease; to describe patterns of caring and to measure the burden on those who care for people with dementia; and to create a data base for future research. A representative sample of 10,250 Canadians aged 65 or over are recruited, including 9,000 living at home and 1,250 in institutions. Participants are screened for cognitive impairment. Those who are considered to be cognitively impaired (and an equal number who are not) are invited to undergo a clinical examination including a battery of neuropsychological tests. Proxies for the cases and controls complete a risk factor questionnaire; caregivers complete a separate questionnaire. Results of the pilot study are discussed.Copyright © 1992 S. Karger AG, Basel
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Samenvatting De IDQOL is een korte vragenlijst (quickscan) die beoogt kwaliteit van bestaan van mensen met een verstandelijke handicap inzichtelijk te maken. De 16 vragen (over psychisch, sociaal en wonen) worden als 'aanvulzinnen' aan de cliënten met een ver- standelijke handicap voorgelegd. Gevraagd wordt naar het subjectieve oordeel over verschillende levensgebieden. Door de afname wordt inzicht verkregen in de kwaliteit van bestaan. Meer specifieke informatie, over de levensgebieden/domeinen (zoals wonen en werken), kan verkregen worden door afname van één of meer aanvullende modulen.
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Few studies have examined the relationship of behavior and health status among aging persons with intellectual and developmental disabilities (I/DD). Behavioral disorders, which often are coincident with functional decline in older persons with I/DD, may be more related to medical morbidity than previously reported. This cross-sectional study examined the association between health status and behavior disorders with increasing age in a cohort of 60,752 adults with I/DD clustered into four adult-age groupings (21-44, 45-59, 60-74, and >74). Age grouping data suggested an association between morbidity and increased likelihood of behavior symptoms in all but the oldest age grouping. The magnitude of the association and trend varied by specific disease across age groupings compared to that found in healthy cohorts. About 25% of the adults with I/DD had psychiatric diagnoses and the frequency of such diagnoses did not decrease with age grouping. These results suggest that adverse health status may increase the likelihood of persistent behavioral disturbances in older persons with I/DD. Moreover, behavioral disorders may be sentinels for occult medical morbidity, which in turn may be responsive to intervention.
Abstract  Reported here are the preliminary results of a study in the Netherlands to provide service and aid to persons with intellectual disability (ID) and hearing impairment. Participants were people with ID in two residential care centers and three community-based services. In spite of a planned design the implementation failed or remained incomplete in all five ID services. We conclude from this experience that innovative projects in ID services should not only concentrate on people (available trained professionals) and means (equipment, imbursement, guidelines, procedures), but involvement of the “local care providers,” which requires adequate management, is a factor ultimately determining success or failure.
Abstract As many adults with intellectual disability (ID) have an increased risk of low vision, ID service providers should play an active role in vision rehabilitation. However, low vision rehabilitation is a new and complex intervention for many providers in this field. To increase awareness of vision rehabilitation, it was proposed that the process of concept-mapping be tested to see whether it would lead to increased acceptance of vision rehabilitation. In our test, the use of concept-mapping appeared to be a satisfactory method for increasing awareness of professionals and middle managers of the complexity of vision rehabilitation, but it was found that it can only be useful for change if connected to a strategic decision by top management and the adoption of an action plan by the service provider.
Article
ABSTRACT– A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
Article
The study compared the effects of Acceptance and Commitment Therapy (ACT) with Tinnitus Retraining Therapy (TRT) on tinnitus impact in a randomised controlled trial. Sixty-four normal hearing subjects with tinnitus were randomised to one of the active treatments or a wait-list control (WLC). The ACT treatment consisted of 10 weekly 60 min sessions. The TRT treatment consisted of one 150 min session, one 30 min follow-up and continued daily use of wearable sound generators for a recommended period of at least 8h/day for 18 months. Assessments were made at baseline, 10 weeks, 6 months and 18 months. At 10 weeks, results showed a superior effect of ACT in comparison with the WLC regarding tinnitus impact (Cohen's d=1.04), problems with sleep and anxiety. The results were mediated by tinnitus acceptance. A comparison between the active treatments, including all assessment points, revealed significant differences in favour of ACT regarding tinnitus impact (Cohen's d=0.75) and problems with sleep. At 6 months, reliable improvement on the main outcome measure was found for 54.5% in the ACT condition and 20% in the TRT condition. The results suggest that ACT can reduce tinnitus distress and impact in a group of normal hearing tinnitus patients.
Article
In the last decades several instruments measuring anxiety in adults with intellectual disabilities have been developed. To give an overview of the characteristics and psychometric properties of self-report and informant-report instruments measuring anxiety in this group. Systematic review of the literature. Seventeen studies studying 14 different instruments were found. Methodological quality as measured with the Quality Assessment of Diagnostic Accuracy Studies checklist was insufficient for four studies, sufficient for seven, and good for six. For self-report, the Glasgow Anxiety Scale for people with a learning disability appears most promising, with good internal consistency (a = 0.96), high test-retest reliability (r = 0.95), sensitivity (100%) and specificity (100%). For informant-report, the general anxiety subscale of the Anxiety, Depression and Mood Scale may be promising, with good internal consistency (a = 0.83 and a = 0.84) and excellent test-retest reliability (ICC = 0.78 and ICC = 0.92), but poor interrater reliability (ICC = 0.39). Two instruments appear promising. However, these instruments have only been studied once or twice, whereas the methodological quality of these studies was varying.
Article
A population-based epidemiological study on visual and hearing impairment was planned in a random sample of 2100 clients, drawn from a base population of 9012 users of Dutch residential and day-care intellectual disability (ID) services with the whole range of IDs. Stratification was applied for age 50 years and over and Down syndrome. Visual and hearing functions were assessed according to a standardized protocol, in cooperation with regular ophthalmologists and regional audiological centres. Anticipated obstacles in sample collection, random inclusion, informed consent, expertise of investigators, time and costs were eliminated by a careful preparation. However, inclusion and participation were incomplete. In a descriptive retrospective design, we collected data from our study files on inclusion and participation as well as reasons for non-participation, to identify unanticipated obstacles for this kind of research. Consent was obtained for 1660 clients, and 1598 clients participated in the data collection (76% of intended sample of 2100). Inclusion and participation rates were especially lower in community-based care organizations, resulting in unintentional skewing of the sample towards more severe levels of ID. Complete and reliable data to diagnose visual impairment were obtained for 1358/1598 (85%) and to diagnose hearing impairment for 1237/1598 participants (77%). Unanticipated obstacles had to do with the quality of coordination within care organizations, with characteristics of screening methods, and with collaboration with the regular health care system. Assessments of visual function were more easy to organize than were those of hearing. Based on our current experience, practical recommendations are given for future multicentre research, especially in community-based settings.