Prevalence of swallowing difficulties and associated factors in older people with intellectual disabilities.

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.

Physical activity levels of children and adolescents with moderate-to-severe intellectual disability.

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.

Self-Reported Presence and Experience of Pain in Adults with Down Syndrome.

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.

Pain and Cognitive Functioning in Adults with Down Syndrome.

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.

Biochemical measures and frailty in people with intellectual disabilities.

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.

Automated radiogrammetry is a feasible method for measuring bone quality and bone maturation in severely disabled children.

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.

[Older adults with intellectual disabilities markedly decline in daily functioning over a 3­year period: Results of the HA-ID study]. / Ouderen met een verstandelijke beperking verliezen veel zelfredzaamheid gedurende drie jaar: resultaten van de Gezond Ouder studie (GOUD).

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.

Self-Reporting Tool On Pain in People with Intellectual Disabilities (STOP-ID!): a Usability Study.

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.

[Frailty in people with intellectual disabilities: operationalization, risks and detection]. / Kwetsbaarheid bij ouderen met een verstandelijke beperking: operationalisering, risico en opsporing.

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.

Comparison of anxiety as reported by older people with intellectual disabilities and by older people with normal intelligence.

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.

Factors associated with depression and anxiety in older adults with intellectual disabilities: results of the healthy ageing and intellectual disabilities study.

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.

Development and evaluation of a structured programme for promoting physical activity among seniors with intellectual disabilities: a study protocol for a cluster randomized trial.

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.

Comparison of two types of Actiwatch with polysomnography in older adults with intellectual disability: a pilot study.

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.

Feasibility and reliability of physical fitness tests in older adults with intellectual disability: a pilot study.

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.

Object Recognition and Dorsal Stream Vulnerabilities in Children With Early Brain Damage.

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 (ps = 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.

Metabolic syndrome in 25% of older people with intellectual disability.

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%).

Is the temporal artery thermometer a reliable instrument for detecting fever in children?

AIMS AND OBJECTIVE: 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. BACKGROUND: 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. DESIGN: Diagnostic accuracy/validation study. METHOD: 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. RESULTS: 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. CONCLUSIONS: The diagnostic accuracy of the temporal artery thermometer in detecting fever in children of all ages is low. RELEVANCE TO CLINICAL PRACTICE: We do not recommend replacement of standard clinical thermometers with temporal artery thermometers.

Clinical Assessment of Visual Motion Perception in Children With Brain Damage: A Comparison With Base Rates and Control Sample.

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.

Physical fitness of children and adolescents with moderate to severe intellectual disabilities.

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 (ß = 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.

Epidemiology of low bone mineral density and fractures in children with severe cerebral palsy: a systematic review.

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.