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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]

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]

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]

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]

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]

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]

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]

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]

Abstract. Purpose: To collect data on refractive errors and visual impairment in adults with an intellectual disability (ID) in the Netherlands. Patients: A randomized sample of 2100 participants was drawn from a base population of 9000 adults with intellectual disabilities in the Netherlands. This article reports on the first 900 participants. Methods: All participants underwent a protocol-based on-site ophthalmological assessment carried out by skilled investigators. Results: Co-operation was classified according to the number of tests that could be carried out reliably and was good or excellent in 80% of subjects, average in 13% and poor in 7%. Refraction could be reliably assessed in 505/900 (56%) subjects. There was an increased risk of visual impairment in all subgroups compared to the general Dutch population. Visual acuity (VA) was related to the level of ID, but refractive errors were not. New spectacles were prescribed in 106 cases (12%). Of 374 people in whom both monocular VA and the refractive error of the right eye could be reliably assessed, 153 (41%) had a pretest prescription, 16 (10%) of which we found to be inadequate. Of the 221 participants without a pretest prescription, 41 (19%) benefited from correction. Only 38/84 (45%) subjects aged 50 years or older, who could benefit from correction for near vision, had near spectacles. New correction increased the mean distant VA significantly from 0.44 to 0.65 (p < 0.0005). Conclusions: With some adaptations, visual screening is feasible in a majority of adults with ID. Visual impairment and refractive errors are much more prevalent in adults with ID than in the normal population. Accurate spectacle correction resulted in significant improvement in distant VA. [ABSTRACT FROM AUTHOR]