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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aim: In this study, we examined (1) the presence of abnormally low scores (below 10th 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 (Mage = 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. [ABSTRACT FROM AUTHOR]

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. Strikingly 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

BackgroundAdults with Down syndrome (DS) are at risk for age-related painful physical conditions, but also for under-reporting pain. Pictograms may facilitate self-report of pain, because they seem suitable for the global visual processing in DS and for iconic representation of abstract concepts. MethodParticipants (N = 39,Mage = 41.2) assigned pain qualities to pictograms, rated pain affect levels in facial scales (pictograms vs. drawn faces), and performed cognitive tests. ResultsRecognition of all intended pain qualities was above chance level. Pain affect levels of both facial scales were ordered equally well. Both facial scales were preferred equally well. Comprehension of the 3 scales was positively associated with mental age, receptive language ability, and verbal memory. Most participants (74%) had pictograms in their direct environment, mainly to communicate activities or objects. ConclusionUsing pictograms may optimise communication about pain for a subgroup of cognitively higher functioning adults with DS. [ABSTRACT FROM PUBLISHER]

Objective. The presence of apolipoprotein E (ApoE) ε4 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 aftermovement) were used with a cross-sectional design in 146 adults withDS(mean age 39.1 years, mild to moderate intellectual disabilities, 46% men, 30% ApoE ε4 carrier). Results. The difference between ApoE ε4 carriers and noncarriers was not statistically significant for cognitive function, pain experience, and prevalence of potentially painful conditions. Among ε4 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 ε4 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Copyright of Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

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. Trial registration: Trial number: ISRCTN82341588 [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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

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

Objectives To obtain first insight into prevalence and correlates of frailty in older people with intellectual disability ( ID). Design Population-based cross-sectional study in persons using formal ID services. Setting Three Dutch care provider services. Participants Eight hundred forty-eight individuals with borderline to profound ID aged 50 and older participating in the Healthy Ageing and Intellectual Disability ( HA- ID) Study. Measurements All participants underwent an extensive health examination. Frailty was diagnosed according to Cardiovascular Health Study criteria. Associations between frailty and participant characteristics were investigated using multivariate logistic regression analysis. Results Prevalence of frailty was 11% at age 50 to 64 and 18% at age 65 and older. Age, Down syndrome, dementia, motor disability, and severe ID were significantly associated with frailty, but only motor disability had a unique association with frailty. In a regression model with these variables, 25% of the variance of frailty was explained. Conclusion At age 50 to 64, prevalence of frailty is as high as in the general population aged 65 and older (7-9%), with a further increase after the age of 65. Motor disability only partially explains frailty. Future studies should address health outcomes, causes, and prevention of frailty in this population. [ABSTRACT FROM AUTHOR]

Background: Accurate prediction equations for estimating body composition and total energy expenditure (TEE) in children with severe neurologic impairment and intellectual disability are currently lacking. Objective: The objective was to develop group-specific equations to predict body composition by using skinfold-thickness measurements and bioelectrical impedance analysis (BIA) and to predict TEE by using data on mobility, epilepsy, and muscle tone. Design: Measures of body composition with the use of skinfold-thickness measurements (percentage of body fat) and BIA (total body water) were compared with those from isotope dilution (reference method) by using intraclass correlation coefficients (ICCs) and Bland and Altman limits of agreement analyses. With the use of the same methods, the outcomes of cerebral palsy-specific TEE equations were compared with those of the doubly labeled water method (reference method). Group-specific regression equations were developed by using forward-stepwise-multiple-correlation-regression analyses. Results: Sixty-one children with a mean (°SD) age of 10.1 ° 4.3 y (32 boys) were studied. A new equation based on the sum of 4 skinfold-thickness measurements did not improve agreement (n = 49; ICC = 0.61), whereas the newly developed BIA equation-which includes tibia length as an alternative for standing height-did improve agreement (n = 61; ICC = 0.96, SEE = 1.7 kg, R2 = 0.92). The newly developed TEE equation, which uses body composition, performed better (n = 52; ICC = 0.87, SEE = 180 kcal, R2 = 0.77) than did the equation of Schofield (n = 52; ICC = 0.82, SEE = 207 kcal, R2 = 0.69). Conclusions: Current cerebral palsy-specific equations for measuring body composition and energy expenditure are inaccurate. BIA is more accurate at assessing nutritional status in this population than is the measurement of skinfold thickness. The newly developed TEE equation, which uses body composition, provides a reasonable estimate of energy expenditure in these children despite its variability. [ABSTRACT FROM AUTHOR]

We aimed to study the diagnostic accuracy of the temporal artery thermometer vs. rectal temperature in a large group of children with and without fever, aged 0-18 years. Many have studied the diagnostic accuracy of the temporal artery thermometer in children compared with a reference method, with contradictory outcomes. No studies have been carried out in a large group of children of all ages. Diagnostic accuracy/validation study. Children (0-18 years) with fever ( T > 38·0 °C) were recruited through the emergency department and children with normal temperatures through the day-care department of the Children's Hospital. All children routinely had rectal temperature recordings. Temporal artery temperature was recorded shortly after the rectal recording. The mean absolute difference in temperature, the level of agreement (intraclass correlation coefficient) and the sensitivity and specificity of detecting fever were calculated. A total number of 198 children (121 boys) participated, with a mean age of 5·1 (SD 4·7) years. Of those children, 81 had fever according to the rectal recording. Mean difference between temporal artery temperature and rectal temperature was −0·11 (SD 0·63) °C, with an agreement of 0·812. The sensitivity and specificity of the temporal artery thermometer for detecting fever were 67·9 and 98·3%, respectively. The diagnostic accuracy of the temporal artery thermometer in detecting fever in children of all ages is low. We do not recommend replacement of standard clinical thermometers with temporal artery thermometers. [ABSTRACT FROM AUTHOR]

Background. Life expectancy of people with intellectual disabilities (IDs) is rapidly normalizing, as are prevalences of age-related cardiovascular disease in this group. We investigated the prevalence of the metabolic syndrome in the older population with ID and associations with patient characteristics.Methods. Prevalence of the metabolic syndrome, according to National Cholesterol Education Program-Adult Treatment Panel III criteria, was assessed with standardized physical examinations in 470 Dutch adults with ID, aged ≥50 years, who receive residential care from three Dutch care providing organizations. Because of skewing towards an overrepresentation of females and more moderate to severe ID in the study population, reweighting was applied to obtain a representative population prevalence. Correlations with patient characteristics were analysed with logistic regression analyses.Results. Four hundred and twelve participants completed all assessments. The weighted prevalence of the metabolic syndrome was 25.1% [95% confidence interval (CI) 21.0–29.3%], with a significantly higher risk for people with mild ID.Conclusions. The prevalence of the metabolic syndrome in the population with ID is significantly higher than that in the general Dutch population aged ≥50 years (15.7%, 95% CI 13.5–17.9%). [ABSTRACT FROM PUBLISHER]

In a prospective longitudinal cohort study of dementia and mortality in persons with Down syndrome aged 45 years and older, 85 postmenopausal women were followed for a mean follow-up time of 4.3 years (range 0.0 to 7.4 years). The effect of age at menopause on age at diagnosis of dementia and survival was estimated using correlation analysis and Cox Proportional Hazard Model. We found a significant correlation between age at menopause and age at diagnosis of dementia (ρ=0.52; p< 0.001), and between age at menopause and age at death (ρ=0.49; p=0.01). Early age at menopause is associated with a 1.8 fold increased risk of dementia: Hazard Ratio (HR): 1.82 (95%Confidence Interval (CI): 1.31–2.52) and with risk of death: HR: 2.05 (95%CI: 1.33–3.16). Our study suggests that age at menopause in women with Down syndrome is a determinant of age at onset of dementia and mortality. [ABSTRACT FROM AUTHOR]

Training in scientific research methods and skills is a vital part of Dutch specialist training in intellectual disability medicine. The authors evaluated results of such training at one Dutch university medical facility that had an obligatory research program involving projects conducted by the physicians-in-training (topics, teamwork, acquired competencies, and products). Since 2000, 28 research projects were started, and 24 of them were completed by teams made up of two to five trainees. Project topics included syndrome-related comorbidity ( n = 8), lifestyle ( n = 2), specific medical conditions ( n = 5), diagnostic methods ( n = 5), and care by intellectual disability physicians ( n = 8). Sixteen of the study designs were cross-section observational, five were retrospective file reviews, one dealt with instrument development, three were qualitative, and three were literature studies. Structured exit evaluation interviews with 57 trainees (20 teams) showed that teamwork was appreciated positively by 17 of the teams, negatively by one, and mixed by two teams. While skills in literature search were reported as competencies present prior to the specialist training, additional basic scientific competencies were reported as acquired or improved by over 50% of trainees (including translating clinical into research questions, literature appraisal, protocol writing, data collection in the field, data entry, critical–analytical competency, and dealing with feedback and criticism). Trainee end products include 16 written reports, three journal articles in Dutch-language publications, eight articles in international journals, and 14 international congress presentations/publications. [ABSTRACT FROM AUTHOR]

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Aim Children with severe cerebral palsy (CP) are at risk for developing low bone mineral density (BMD) and low-impact fractures. The aim of this study was to provide a systematic literature review of the epidemiology of fractures and low BMD in children with severe CP, with an emphasis on risk factors. Gross Motor Function Classification System (GMFCS) levels IV and V were criteria for severe cerebral palsy. Method The literature (PubMed) was searched and eligible studies were given a level of evidence score using the Scottish Intercollegiate Guidelines Network criteria. Results Seven studies were found concerning epidemiology of fractures, 11 studies described epidemiology of low BMD, and 14 studies concerned risk factors. The methodological quality of most of these studies was poor. Five studies were considered well-conducted with low risk of confounding and bias. In these studies, the incidence of fractures in children with moderate to severe CP approached 4% per year, whereas the prevalence of low BMD in the femur was 77%. Limited ambulation, feeding difficulties, previous fractures, anticonvulsant use, and lower body fat mass were associated with low BMD z-scores. Interpretation There is only a limited amount of high-quality evidence on low BMD and fractures in children with severe CP. [ABSTRACT FROM AUTHOR]

The longer life expectancy now experienced by persons with Down syndrome (DS) makes it necessary to know the factors influencing survival in older persons with this syndrome. In a prospective longitudinal cohort study of dementia and mortality, 506 persons with DS aged 45 and older were followed for a mean of 4.5 years (range 0.0–7.6 years). Cognitive and social functioning were tested at baseline and annual follow-up. The diagnosis of dementia was determined according to a standardized protocol. Cox proportional hazards modeling was used for survival analysis. Relative preservation of cognitive and functional ability is associated with better survival in this study population. Clinically, the most important disorders in persons with DS that are related to mortality are dementia, mobility restrictions, visual impairment, and epilepsy but not cardiovascular diseases. Also, level of intellectual disability and institutionalization are associated with mortality. [ABSTRACT FROM AUTHOR]

This study assessed the clinical indicators and severity of dysphagia in a representative sample of children with severe generalized cerebral palsy and intellectual disability. A total of 166 children (85 males, 81 females) with Gross Motor Function Classification System Level IV or V and IQ<55 were recruited from 54 daycare centres. Mean age was 9 years 4 months (range 2y 1mo–19y 1mo). Clinically apparent presence and severity of dysphagia were assessed with a standardized mealtime observation, the Dysphagia Disorders Survey (DDS), and a dysphagia severity scale. Additional measures were parental report on feeding problems and mealtime duration. Of all 166 participating children, 1% had no dysphagia, 8% mild dysphagia, 76% moderate to severe dysphagia, and 15% profound dysphagia (receiving nil by mouth), resulting in a prevalence of dysphagia of 99%. Dysphagia was positively related to severity of motor impairment, and, surprisingly, to a higher weight for height. Low frequency of parent-reported feeding problems indicated that actual severity of dysphagia tended to be underestimated by parents. Proactive identification of dysphagia is warranted in this population, and feasible using a structured mealtime observation. Children with problems in the pharyngeal and esophageal phases, apparent on the DDS, should be referred for appropriate clinical evaluation of swallowing function. [ABSTRACT FROM AUTHOR]

Background: In children with severe generalized cerebral palsy, pneumonias are a major health issue. Malnutrition, dysphagia, gastro-oesophageal reflux, impaired respiratory function and constipation are hypothesized risk factors. Still, no data are available on the relative contribution of these possible risk factors in the described population. This paper describes the initiation of a study in 194 children with severe generalized cerebral palsy, on the prevalence and on the impact of these hypothesized risk factors of recurrent pneumonias. Methods/Design: A nested case-control design with 18 months follow-up was chosen. Dysphagia, respiratory function and constipation will be assessed at baseline, malnutrition and gastrooesophageal reflux at the end of the follow-up. The study population consists of a representative population sample of children with severe generalized cerebral palsy. Inclusion was done through care-centres in a predefined geographical area and not through hospitals. All measurements will be done on-site which sets high demands on all measurements. If these demands were not met in "gold standard" methods, other methods were chosen. Although the inclusion period was prolonged, the desired sample size of 300 children was not met. With a consent rate of 33%, nearly 10% of all eligible children in the Netherlands are included (n = 194). The study population is subtly different from the non-participants with regard to severity of dysphagia and prevalence rates of pneumonias and gastro-oesophageal reflux. Discussion: Ethical issues complicated the study design. Assessment of malnutrition and gastrooesophageal reflux at baseline was considered unethical, since these conditions can be easily treated. Therefore, we postponed these diagnostics until the end of the follow-up. In order to include a representative sample, all eligible children in a predefined geographical area had to be contacted. To increase the consent rate, on-site measurements are of first choice, but timely inclusion is jeopardised. The initiation of this first study among children with severe neurological impairment led to specific, unexpected problems. Despite small differences between participants and non-participating children, our sample is as representative as can be expected from any population-based study and will provide important, new information to bring us further towards effective interventions to prevent pneumonias in this population. [ABSTRACT FROM AUTHOR]

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

The extent to which therapeutic intervention of hearing loss may yield better communication and social interaction was investigated in a pilot study during seven months after treatment in twelve hearing impaired subjects with Down syndrome with a mean age of 50.6 years. Although according to spontaneous observations of staff subtle positive reactions to treatment occurred in five subjects, no significant improvement could be measured by means of objective methods. The influence of personal factors like degree of retardation and language development, severity and duration of hearing impairment, age, period of habituation and training, and environmental factors, is to be studied further. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]