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Background: We investigated the prevalence of swallowing difficulties and associated factors in people with intellectual disability., Methods: We included people aged 50+ receiving care for people with intellectual disabilities. The Dysphagia Disorder Survey (DDS) was used to assess swallowing difficulties. We determined the agreement between the DDS and swallowing difficulties in medical records. We used logistic regression analyses to explore associated factors., Results: One thousand and fifty people were included. The prevalence of swallowing difficulties was 43.8%. Swallowing difficulties were not reported in the medical records of 83.3% of these cases. Frailty (odds ratio (OR) = 4.22, 95% CI = 2.05-8.71), mobility impairment (OR = 2.50, 95% CI = 1.01-6.19), and mealtime dependency (OR = 3.05, 95% CI = 1.10-8.47) were independently associated with swallowing difficulties., Conclusion: Swallowing difficulties are prevalent in older people with intellectual disability but may be under-recognised. Frailty may be a good indicator for population-based screening for swallowing difficulties., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Aim: Visual functions of the dorsal stream are considered vulnerable in children with early brain damage. Considering the recognition of objects in suboptimal representations a dorsal stream dysfunction, we examined whether children with early brain damage and impaired object recognition had either general or selective dorsal stream dysfunctions., Method: In a group of children with early brain damage ( n = 48) we evaluated the dorsal stream functioning. To determine whether these patients had an increased risk of a dorsal stream dysfunction we compared the percentage of patients with impaired object recognition, assessed with the L94, with the estimated base rate. Then we evaluated the performance levels on motion perception, visual attention and visuomotor tasks in patients with ( n = 18) and without ( n = 11) object recognition abnormalities. A general dorsal stream dysfunction was considered present if a patient showed at least one abnormally low score in two out of three additional dorsal stream functions., Results: Six of the eighteen (33.3%) patients with object recognition problems scored abnormally low on at least two additional dorsal stream functions. This was significantly higher than the base rate ( p = 0.01). The difference of 24.1% between the patients with and without object recognition problems was not significant. Of the patients with object recognition problems 72.2% had at least 1 dorsal weakness, whereas this was only the case in 27.3% of patients without object recognition problems. Compared to patients with normal object recognition, patients with object recognition problems scored significantly more abnormally low on motion perception and visual attention ( p s = 0.03) but did not differ on visuomotor skills., Conclusion: Children with object recognition problems seem at risk for other dorsal stream dysfunctions, but dysfunctions might be rather specific than general. Multiple functions/aspects should be evaluated in neuropsychological assessment of children at risk., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 van der Zee, Stiers and Evenhuis.)

Aim: In this study, we examined (1) the presence of abnormally low scores (below 10 th percentile) in various visual motion perception aspects in children with brain damage, while controlling for their cognitive developmental delay; (2) whether the risk is increased in comparison with the observation and expectation in a healthy control group and healthy population. Methods: Performance levels of 46 children with indications of brain damage (M age = 7y4m, SD = 2y4m) on three visual motion perception aspects (global motion, motion speed, motion-defined form) were evaluated. We used developmental age as entry of a preliminary reference table to classify the patient's performance levels. Then we compared the percentages of abnormally low scores with percentages expected in the healthy population using estimated base rates and the observed percentages in the control sample ( n = 119). Results: When using developmental age as reference level, the percentage of low scores on at least one of the three tasks was significantly higher than expected in the healthy population [19/46, 41% (95%CI: 28-56%), p = 0.03]. In 15/19 (79% [95%CI: 61-97%] patients only one aspect of motion perception was affected. Four patients performed abnormally low on two out of three tasks, which is also higher than expected (4/46, 8.7%, 95%CI: 2.4-20.8% vs. 2.1%; z = 2.61, p < 0.01). The observed percentages in the patient group were also higher than found in the control group. Interpretation: There is some evidence that children with early brain damage have an increased risk of isolated and combined motion perception problems, independent of their performance IQ., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 van der Zee, Stiers, Lagae and Evenhuis.)

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

Background: Regular participation of children and adolescents with intellectual disabilites in physical activity is important to maintain good health and to acquire motor skills. The aim of this study was to investigate the habitual physical activity in these children., Methods: Sixty-eight children and adolescents (2-18 years) with a moderate-to-severe intellectual disability were included in the analyses. They wore an accelerometer on eight consecutive days. Data was analysed by use of descriptive statistics and multiple linear regression analyses., Results: The participants took on average 6,677 ± 2,600 steps per day, with intensity of 1,040 ± 431 counts per minute. In total, 47% of the participants were meeting physical activity recommendations. Low motor development was associated with low physical activity., Conclusions: As more than half of the participants were not meeting the recommendations, family and caregivers of these children should focus on supporting and motivating them to explore and expand their physical activities., (© 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

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%).

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

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

Objective: The aim was to examine whether the presence of pain (based on physical conditions and participants' report) and self-reported pain experience in adults with Down syndrome (DS) differ from general population controls., Design: Cross-sectional study of 224 adults with DS (mean age = 38.1 years, mild-severe intellectual disabilities) and 142 age-matched controls (median age = 40.5 years, mean estimated IQ = 105.7) in the Netherlands., Methods: File-based medical information was evaluated. Self-reported presence and experience of pain were assessed in rest and after movement during a test session (affect with facial affective scale (FAS: 0.04-0.97), intensity assessed with numeric rating scale (NRS: 0-10)., Results: Compared with controls, more DS participants had physical conditions that may cause pain and/or discomfort ( p  = .004, 50% vs 35%), but fewer DS participants reported pain during the test session ( p  = .003, 58% vs 73%). Of the participants who indicated pain and comprehended self-reporting scales ( n  = 198 FAS, n  = 161 NRS), the DS group reported a higher pain affect and intensity than the controls ( p  < .001, FAS: 0.75-0.85 vs 0.50-0.59, NRS: 6.00-7.94 vs 2.00-3.73)., Conclusions: Not all adults with DS and painful/discomforting physical conditions reported pain. Those who did indicated a higher pain experience than adults from the general population. Research into spontaneous self-report of pain, repeated pain assessment, and acute pain is needed in people with DS for more insight into pain experience and mismatches between self-report and medical information., (© 2016 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com)

Objective: The aim of the present study was to examine whether cognitive functioning (i.e., memory and executive functioning) is related to self-reported presence of pain (i.e., affirmative answer to the question whether the individual feels pain) and experience of pain (i.e., intensity and affect) in adults with Down syndrome (DS)., Design, Setting, and Subjects: Cross-sectional study of 224 adults with DS (mean age = 38.1 years, mild-severe intellectual disabilities) in the Netherlands., Methods: File-based medical information was evaluated. Self-reported presence and experience of pain were assessed during a test session, both in rest and after movement (affect with the facial affective scale [FAS], intensity with the numeric rating scale [NRS]). Neuropsychological tests for memory and executive functioning were used., Results: Participants with lower memory scores were more likely to report the presence of pain, while controlling for age, gender, physical conditions that may cause pain, language comprehension, and vocabulary ( p  = .030, 58.4% classification rate, N  = 154). No statistically significant associations were found between executive functioning and self-reported presence of pain or between cognitive functioning and self-reported pain experience., Conclusions: Memory seems to be related to the self-reported presence of pain in adults with DS after explicit inquiry, although the clinical use of this model is yet limited. Therefore, further research is needed for insight into the role of cognitive processes in self-report (e.g., involving aspects such as acquiescence and repeated measurements) to evaluate whether neuropsychological examination could contribute to pain assessment in DS., (© 2016 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com)

Purpose: To determine whether the assessment of visual acuity ratios might improve the referral of children with (sub)normal visual acuity but at risk of cerebral visual impairment., Methods: In an exploratory study, we assessed visual acuity, crowding ratio and the ratios between grating acuity (Teller Acuity Cards-II) and optotype acuity (Cambridge Crowding Cards) in 60 typically developing school children (mean age 5y8m±1y1m), 21 children with ocular abnormalities only (5y7m±1y9m) and 26 children with (suspected) brain damage (5y7m±1y11m). Sensitivities and specificities were calculated for targets and controls from the perspective of different groups of diagnosticians: youth health care professionals (target: children with any visual abnormalities), ophthalmologists and low vision experts (target: children at risk of cerebral visual impairment)., Results: For youth health care professionals subnormal visual acuity had the best sensitivity (76%) and specificity (70%). For ophthalmologists and low vision experts the crowding ratio had the best sensitivity (67%) and specificity (79 and 86%)., Conclusion: Youth health care professionals best continue applying subnormal visual acuity for screening, whereas ophthalmologists and low vision experts best add the crowding ratio to their routine diagnostics, to distinguish children at risk of visual impairment in the context of brain damage from children with ocular pathology only., (Copyright © 2016 Spanish General Council of Optometry. Published by Elsevier España, S.L.U. All rights reserved.)

Background: Testing physical fitness in children and adolescents with intellectual disabilities (ID) can be challenging. This review provides an overview on psychometric properties of field-based physical fitness tests studied in children and adolescents with ID., Methods: A literature search was performed in March 2014. Studies were included if they evaluated feasibility, reliability and/or validity of a field-based physical fitness test in children and adolescents with ID., Results: Twenty-six papers met the inclusion criteria and described 18 tests on body composition (4), muscular strength (4), muscular endurance (6), and cardiorespiratory fitness (4). Best results on feasibility, reliability and/or validity were found for bioelectric impedance analysis, body mass index, grip strength, arm hang and distance run/walk tests. These results were mainly found in adolescents with mild to moderate ID., Conclusion: Some tests were found feasible, reliable and/or valid in subgroups of children and adolescents with ID, but not in children and adolescents with all ages and levels of ID. Further assessment is needed before wider application in all children and adolescents with ID., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

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., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

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.

The responsibilities for the care of a significant portion of the population with an intellectual disability (ID) were recently transferred from the government to the municipalities. It is therefore important that policymakers and care professionals know how much support this population needs in their daily life. Therefore, this study focuses on the decline in daily functioning of older adults with ID (≥50 years, n = 703) over 3 years, and if daily functioning is a predictor for all-cause mortality. Daily functioning was operationalized as basic and instrumental activities of daily living (ADL and IADL) and mobility. Fifty-five percent of the total group declined in ADL, 42 % in IADL, and 38 % in mobility. Thirty-nine percent of the participants with mild ID declined in ADL, 55 % in IADL, and 27 % in mobility. Poor daily functioning and mobility was a risk factor for all-cause mortality. This epidemiological study shows a clear decline in the daily functioning of older adults with intellectual disabilities over a 3-year follow-up period. Care providers should be aware of this decline and focus on maintaining as much independence as possible.

Movakic is a newly developed instrument for measurement of motor abilities in children with severe multiple disabilities, with a satisfactory feasibility and content validity and good inter-observer and test-retest reliability. The objective of this study was to investigate its construct validity and responsiveness to change. Sixty children with severe multiple disabilities (mean age 7.7 years, range 2-16) were measured using Movakic six times during 18 months. Construct validity was assessed by correlating Movakic scores with expert judgment. In order to assess responsiveness, scores during 3-months intervals were compared (mean score-changes and intraclass correlations) during which some children experienced meaningful events influencing motor abilities and during which others experienced no such event. Forty-five percent of children had a lower cognitive development level than 6-month, 52% had Gross Motor Function Classification System level V and 37% had level IV. For 27 children all measurements were completed, six children dropped out. Construct validity was good (r=0.50-0.71). Responsiveness was demonstrated by significantly larger score changes after events than when such events did not occur. Movakic is a valid instrument for measuring motor abilities in children with severe multiple disabilities. Results suggest responsiveness to change in motor abilities after meaningful events., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

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

Objective: The presence of apolipoprotein E (ApoE) ɛ4 allele might be related to higher pain experience due to increased risk for potentially painful physical conditions and cognitive impairment (less efficient coping with pain). This hypothesis is clinically relevant to examine in adults with Down syndrome (DS) because they are at risk for painful physical conditions, their presence of ApoE ε4 is related to cognitive impairment, and their pain experience is unclear. The present pilot study addressed the associations between ApoE genotype, cognition, and pain in DS., Method: DNA analysis of saliva, neuropsychological tests (assessing memory and executive functioning), and self-reporting pain scales (in rest and after movement) were used with a cross-sectional design in 146 adults with DS (mean age 39.1 years, mild to moderate intellectual disabilities, 46% men, 30% ApoE ɛ4 carrier)., Results: The difference between ApoE ɛ4 carriers and noncarriers was not statistically significant for cognitive function, pain experience, and prevalence of potentially painful conditions. Among ɛ4 carriers, the presence of potentially painful conditions was associated with worse executive functioning (p = .022, r = .39)., Conclusions: The clinical implication of the results is that ApoE ɛ4 in DS may play a role in pain, although the theoretical explanation via associations with pain experience and cognition remains unclear. Further research should include a large sample of adults with DS selected on diagnosed painful conditions to obtain more insight into the possible role of ApoE genotype (and its association with cognition) in the pain experience of this target group., (© The Author 2016. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Children with severe neurological impairment and intellectual disability are prone to low bone quality and fractures., Objective: We studied the feasibility of automated radiogrammetry in assessing bone quality in this specific group of children. We measured outcome of bone quality and, because these children tend to have altered skeletal maturation, we also studied bone age., Materials and Methods: We used hand radiographs obtained in 95 children (mean age 11.4 years) presenting at outpatient paediatric clinics. We used BoneXpert software to determine bone quality, expressed as paediatric bone index and bone age., Results: Regarding feasibility, we successfully obtained a paediatric bone index in 60 children (63.2%). The results on bone quality showed a mean paediatric bone index standard deviation score of -1.85, significantly lower than that of healthy peers (P < 0.0001). Almost 50% of the children had severely diminished bone quality. In 64% of the children bone age diverged more than 1 year from chronological age. This mostly concerned delayed bone maturation., Conclusion: Automated radiogrammetry is feasible for evaluating bone quality in children who have disabilities but not severe contractures. Bone quality in these children is severely diminished. Because bone maturation frequently deviated from chronological age, we recommend comparison to bone-age-related reference values.

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 Author 2015. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

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

Based on a systematic review, psychometric characteristics of currently available instruments on motor abilities of children with disabilities were evaluated, with the aim to identify candidates for use in children with severe multiple (intellectual and motor) disabilities. In addition, motor abilities are essential for independent functioning, but are severely compromised in these children. The methodological quality of all studies was evaluated with the Consensus Based Standards for the Selection of Health Status Measurement Instruments (COSMIN) Checklist; overall levels of evidence per instrument were based on the Cochrane Back Review Group strategy. As a result, 18 studies with a total of eight instruments, developed for children with cerebral palsy (CLA, GMFM-88 and LE85), spinal muscular atrophy (MHFMS), neuromuscular diseases (MFM), disabilities 0-6 years (VAB, WeeFIM), and one developed specifically for children with severe multiple disabilities (TDMMT) were found. Strong levels of evidence were found for construct validity of LE85 and MFM and for responsiveness of WeeFIM, but reliability studies of these instruments had a limited methodological quality. Up to now studies of the TDMMT resulted in limited and unknown evidence for structural validity due to the poor methodological quality of reliability studies. In a next step, the clinical suitability of the instruments for children with severe multiple disabilities will be evaluate., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

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

Objectives: To analyze the relationship between frailty and survival in older people with intellectual disabilities (IDs)., Design: Population-based longitudinal observational study., Setting: Three Dutch care provider services., Participants: Individuals with borderline to profound ID aged 50 and older (N=982)., Measurements: 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., Results: 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., Conclusion: 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.)

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.)

Objectives: Older people with intellectual disabilities (ID) may experience more and different symptoms of anxiety than older people with normal intelligence., Study Questions: (1) Is the reported severity of anxiety in this group similar to that in the general older population; (2) Are specific anxiety symptoms reported as frequently by both groups?, Design: Cross-sectional., Setting: Formal Dutch intellectual disability services and Dutch population-based study., Participants: One hundred fifty-four participants of the Healthy Ageing and Intellectual Disability study with mild or moderate ID (IQ <70), aged 55-85 years, and 2,917 participants of the Longitudinal Aging Study Amsterdam with normal intelligence, aged 55-85 years., Measurements: The general anxiety subscale of the Hospital Anxiety and Depression Scale., Results: Mean (standard deviation) Hospital Anxiety and Depression Scale total score of subjects with ID was significantly higher than that of subjects with normal intelligence (3.53 [3.03]) versus 2.53 [3.30]; p <0.01), whereas the percentage of scores above cutoff in both groups was similar. Four of 7 items were more often reported as present by subjects with ID: "tense or wound up feelings," "frightened feelings," "worrying thoughts," and "sudden feelings of panic.", Conclusions: Older people with ID report more symptoms of anxiety than older people with normal intelligence. Tense feelings and worrying especially need more attention, because more than one-half of all older people with ID reported such symptoms., (Copyright © 2014 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

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., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

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., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

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., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

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., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Rationale, Aim and Objectives: 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'., Methods: Qualitative and quantitative methods among participants and programme leaders were used., Results: 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., Conclusions: 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., (© 2014 John Wiley & Sons, Ltd.)

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

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

Multimorbidity may be related to the supposed early aging of people with intellectual disabilities (ID). This group may suffer more often from multimorbidity, because of ID-related physical health conditions, unhealthy lifestyle and metabolic effects of antipsychotic drug use. Multimorbidity has been defined as two or more chronic conditions. Data on chronic conditions have been collected through physical assessment, questionnaires, and medical files. Prevalence, associated factors and clusters of multimorbidity have been studied in 1047 older adults (≥ 50 years) with ID. Multimorbidity was prevalent in 79.8% and associated with age and severe/profound ID. Four or more conditions were prevalent in 46.8% and associated with age, severe/profound ID and Down syndrome. Factor analyses did not reveal a model for disease-clusters with good fit. Multimorbidity is highly prevalent in older adults with ID. Multimorbidity should receive more attention in research and clinical practice for targeted pro-active prevention and treatment., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Heart rate recovery (HRR) after exercise is an independent predictor for cardiovascular and all-cause mortality. To investigate the usefulness of HRR in cardiorespiratory exercise testing in older adults with intellectual disabilities (ID), the aims of this study were (a) to assess HRR in older adults with ID after the 10-m incremental shuttle walking test (ISWT) and (b) its association with personal characteristics (gender, age, distance walked on the ISWT, level of ID, genetic syndrome causing ID, autism, behavioral problems, and peak heart rate (HRpeak)). HRR was assessed after the 10-m incremental shuttle walking test in 300 older adults (>50 years) with borderline to profound ID. HRR was defined as the change from HRpeak during the ISWT to heart rate measured after 1, 2, 3, 4, and 5 min of passive recovery. The largest decrease in heart rate was in the first minute of recovery leveling off toward the fifth minute of recovery. An abnormal HHR (≤12 bpm) was seen in 36.1% of the participants with Down syndrome (DS) and in 30.7% of the participants with ID by other causes. After the fifth minute the heart rates of 69.4% of the participants with DS and of 61.4% of the participants with ID by other causes returned to resting levels. HRpeak and distance walked on the ISWT were positively related to all HRR measures. More severe ID was negatively related and having DS positively related to HRR after 3-5 min of recovery. The other characteristics were not significantly associated to HRR. HRR is a potentially useful outcome measure in cardiorespiratory fitness testing of older adults with ID with a direct, objective, and non-invasive measurement. Further research is needed to identify the relation between HRR and adverse health outcomes in this population., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Although physical fitness is generally very low in older adults with intellectual disabilities (ID), levels may differ across subgroups. It is important to identify which subgroups need to be targeted specifically in physical activity and fitness interventions and reference values. Physical fitness was measured with box-and-block-test, response-time-test, Berg-balance-scale, walking speed, grip strength, 30s-chair-stand, 10 m incremental-shuttle-walking test and the extended modified-back-saver-sit-and-reach-test in a large sample of older adults with ID (n=1050), and subgroups associated with lower physical fitness levels were identified applying multivariate linear regression analyses. Both fixed personal characteristics such as being older, being female, having more severe ID and having Down syndrome and modifiable or preventable factors such as physical activity levels, mobility impairments and a need of more intensive care, are independently associated with lower levels of multiple physical fitness components. This first study identifies subgroups of older adults with ID which require adapted reference values, and subgroups that need to be specifically targeted in fitness promotion programs., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

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

Objective: To investigate how doctors can improve the advice and education about sexuality and contraception given to young people with mild intellectual disability (IQ :50-70)., Design: Semi-structured interviews., Method: Young people attending special needs secondary schools (IQ: 50-70) were interviewed. Pupils with a known history of sexual abuse were excluded., Results: A total of 17 of the 57 potential candidates were excluded. Of the remaining 40 pupils, 28 agreed to take part (13 male; age range: 15-18 years, average IQ: 58). Of the 28 participants, 19 had been in a relationship, 5 had experience with sexual intercourse and 11 used contraception. Just as in other studies, the participants seemed to have less knowledge, and less experience than young people of their age without a disability, but did show interest. They were at increased risk because of inappropriate use of contraception and had limited social resilience. Only knowledge about the pill and condoms was fair to good. Interest and knowledge seemed greater in those young people in a relationship. Poor verbal skills hampered their understanding of the questions asked and of the information offered, and limited their ability to express feelings and opinions. Those young people in a relationship wanted to choose their own form of contraception., Conclusion: In this group of vulnerable young people, provision of sexual education by the doctor at the right moment using simple language and repetition, can contribute to the timely and safe use of contraceptives.Conflict of interest and financial support: none declared.

The current study focuses on the characteristics of older people with intellectual disabilities with the lowest frailty levels. Frailty is an increased risk of adverse health outcomes and dependency. Older adults with intellectual disabilities (ID) show more signs of early frailty than the general population. Knowledge of the least frail group characteristics may provide insight into possibilities to prevent early frailty in older people with intellectual disabilities. This study was part of the Healthy Aging and Intellectual Disability study (HA-ID) which incorporated 1050 adults aged 50 years and over with all levels of ID. Frailty was measured with a frailty index. The least frail group was selected based on a frailty index score ≤ 0.10. Odds ratios were used to compare the occurrence of health deficits in the least frail group to the remaining group. The least frail group consisted of 65 participants, corresponding with 6.6% of the study population. The least frail group was significantly younger, had less severe levels of ID, and less often Down syndrome than the remaining group. The lack of mobility and physical fitness limitations, dependence, no signs of depression/dementia, and little medical problems characterized the least frail group. The percentage of 50+ adults with intellectual disabilities within the least frail group is very low compared to that in the general aging population (>43%). Interventions to prevent or delay frailty in this population are highly recommended and can focus on health characteristics of the least frail group., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

A study with 1050 people over the age of 50 years with mild to severe intellectual disabilities showed that the health of this group declined at a much younger age than in the general population of the same age. The cardiovascular risk was often higher and depression and sleep disorders were more common in people aged over 50 years with intellectual disabilities, but these were often not diagnosed. Recognising the underlying causes and determining which approach to take to them require specialist knowledge. The accumulation of unfavourable factors from childhood may lead to people becoming frail at an earlier age, which in this population is predictive of a decline in health and independence and a high risk of death within 3 years. The prevalences of multimorbidity and polypharmacy in people over 50 with intellectual disabilities are comparable to those of the Dutch nursing home population. In order to maintain the health and independence of people with an intellectual disability for longer, an improvement in vocational training for carers, development of multidisciplinary guidelines, and enhancement of the quality and availability of outpatient clinics with intellectual disability specialists are required.

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

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

Background: The Actiwatch is increasingly being used to investigate sleep. The aim of this study was to investigate which sensitivity setting of the Actiwatch is most suitable to detect sleep disturbance in older adults with intellectual disability (ID)., Method: Two Actiwatch types were compared to polysomnography (PSG) in 10 older adults with mild ID, using a 1-min epoch-to-epoch comparison. Outcome measures were sleep detection percentage, wake detection percentage, and overall accuracy of both Actiwatches, and several sleep parameters., Results: The high sensitivity setting of the Actiwatch appeared most suitable to detect sleep disturbance in older adults with ID (wake detection percentage = 54.6%, sleep detection percentage = 89.7%). Sleep parameters calculated using the high sensitivity setting corresponded well to PSG outcomes. Outcomes were similar for both Actiwatches., Conclusions: We recommend using the high sensitivity setting of the Actiwatch for clinical evaluation of sleep, and for epidemiological research in older adults with ID.

High incidence of falls and increased risk of fall-related injuries are seen in individuals with intellectual disabilities (ID). The Berg Balance Scale (BBS) is a reliable instrument for balance assessment in the population of (older) adults with ID. The aims of this study were to assess the balance capacities of a large group of older adults with ID with the BBS and look for gender and age effects, as well as reasons for drop-out on separate items, and to identify feasible subtests for subgroups in which the complete BBS is not feasible. The balance capacities of 1050 older clients with borderline to profound ID of three Dutch care-provider services (mean age 61.6 [sd=8.0]) were assessed with the BBS. The participants who completed all items of the BBS (n=508) were the functionally more able part of the study sample. Results showed that even this functionally more able part had poor balance capacities, with a mean BBS score of 47.2, 95% CI [46.3, 48.0], similar to adults in the general population aged around 20 years older. Balance capacities decreased with increasing age and females had poorer balance capacities than males. Difficulties understanding the task and physical limitations were most often the reasons for drop-out. Feasible subtests were identified for the subgroups with very low cognitive levels and wheelchair users. Low balance capacities of older adults with ID show the need for regular screening and the urge for fall prevention programs for individuals with ID., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Background: Older people with intellectual disabilities have very low physical activity levels. Well designed, theory-driven and evidence-based health promotion programmes for the target population are lacking. This paper describes the design of a cluster-randomised trial for a systematically developed health promotion programme aimed at improving physical activity and increasing fitness among seniors with intellectual disabilities., Methods and Design: The Intervention Mapping protocol was used for programme development. After defining the programme's objectives, the following behavioural techniques were selected to achieve them: Tailoring, Education, Modelling, Mirroring, Feedback, Reinforcement and Grading. With professionals and managers of provider services for people with intellectual disabilities, we translated these strategies into a structured day-activity programme, that consisted of a physical activity and an education programme. The programme will be executed in five day-activity centres in groups of eight to ten seniors during eight months, whereas seniors in five other centres receive care as usual. The physical activity level, as measured in number of steps a day, will be used as primary outcome measurement. Secondary outcome measurements include motor fitness, cardio respiratory fitness, morphological and metabolic fitness, ADL, functional deterioration and depressive symptoms. Differences in the primary and secondary outcome measures between participants and controls will be analysed using generalized estimation equations, correcting for day-activity center as cluster., Discussion: This paper provides insight into the development and content of a theory-driven intervention aimed at behavioural change in a population with a low intellectual level. Its evaluation design is described. The programme's applicability to other populations is discussed.

Little is known about sleep in older adults with intellectual disability (ID). Aim of this study was to investigate sleep and its associated factors, and to estimate the prevalence of sleep problems in this population. This study was part of the healthy aging and intellectual disabilities study. Sleep was assessed using the Actiwatch, a watch-like device that measures sleep and wakefulness based on movement activity. Participants (n=551) wore the Actiwatch at least seven days and nights continuously. Variables of interest were time in bed (TIB), sleep onset latency, total sleep time, wake after sleep onset, sleep efficiency and get-up time latency. Multivariate analyses were used to investigate factors associated with these sleep parameters. Provisional definitions were drafted to estimate the prevalence of sleep problems. Mean TIB was 630 min. Longer TIB was independently associated with higher age, more severe level of ID, living at a central facility, wheelchair dependence, female gender and depressive symptoms (adjusted R(2)=.358, F-change=8.302, p<.001). The prevalence of sleep problems was 23.9% settling problem, 63.1% night waking problem, 20.9% short sleep time, 9.3% early waking problem. 72% of the participants had at least one problem, 12.3% had three or more sleep problems. Older adults with ID lie in bed very long, and the prevalence of sleep problems is high. Further research should focus on causality of the relationships found in this study, and effects of sleep problems on health and well-being in this population., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

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

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

Prescribing pharmacotherapy for older individuals with an intellectual disability (ID) is a complex process, possibly leading to an increased risk of prescription errors. The objectives of this study were (1) to determine the prevalence of older individuals with an intellectual disability with at least one prescription error and (2) to identify potential risk factors for these prescription errors (age, gender, body mass index (BMI), frailty index, level of intellectual disability and living situation). The study population consisted of 600 older (≥ 50 years) individuals with an ID using one or more drugs who were randomly selected from the study cohort of the Healthy Ageing and Intellectual Disability (HA-ID) Study. The medication used at the time of measurement was screened for errors by a hospital pharmacist/clinical pharmacologist and a Master's student pharmacy using consensus methodology. Participants with one or more prescription errors were compared to participants without prescription errors by multivariate logistic regression to identify potential risk factors. The prevalence of individuals with one or more prescription errors was 47.5% (285 of 600 individuals; 95% confidence interval (CI) 43-52%). Relevant errors, defined as errors that actually do require a change of pharmacotherapy, were identified in 26.8% of the individuals (161 of 600 individuals; 95% CI 23-30%). Higher age (adjusted odds ratio (OR adj) 1.03; 95% CI 1.01-1.06), less severe intellectual disability (moderate: OR adj 0.48; 95% CI 0.31-0.74 and severe: OR adj 0.56; 95% CI 0.32-0.98), higher BMI (OR adj 1.04; 95% CI 1.01-1.08), higher frailty index (0.39-0.54: OR adj 2.4; 95% CI 1.21-4.77 and ≥ 0.55: OR adj 3.4; 95% CI 1.03-11.02), polypharmacy (OR adj 8.06; 95% CI 5.59-11.62) and use of medicines acting on the central nervous system (OR adj 3.34; 95% CI 2.35-4.73) were independently associated with the occurrence of prescription errors. Interventions targeted to high risk patients should be designed and implemented to improve pharmacotherapy in older individuals with an intellectual disability., (Copyright © 2013 Elsevier Ltd. All rights reserved.)