Cardiovascular risk factors (diabetes, hypertension, hypercholesterolemia and metabolic syndrome) in older people with intellectual disability: Results of the HA-ID study

Hypertension, diabetes, hypercholesterolemia and the metabolic syndrome are important risk factors for cardiovascular disease (CVD). In older people with intellectual disability (ID), CVD is a substantial morbidity risk. The aims of the present study, which was part of the Healthy Ageing in Intellectual Disability (HA-ID) study, were (1) to determine the prevalence of CVD risk factors in older people with ID and to compare this with the prevalence in the same-aged general population, (2) to determine how many risk factors had not been previously diagnosed, and (3) to identify correlates of CVD risk factors (gender, age, level of ID, Down syndrome, independent living, activities of daily living, mobility, instrumental activities of daily living, physical activity, use of atypical antipsychotics, central obesity), using logistic regression analyses. In this cross-sectional study, 980 people with borderline to profound ID participated. Hypertension (53%), diabetes (14%) and metabolic syndrome (45%) were present similarly as in the general Dutch population. Hypercholesterolemia was present less often (23%). Fifty percent of the people with hypertension had not been previously diagnosed with this condition. Percentages for diabetes, hypercholesterolemia, and the metabolic syndrome were 45, 46 and 94 respectively. People who were more at risk for CVD risk factors were women, older people, people with obesity, people who lived more independently and people who were able to do groceries or prepare a meal independently. Policy on prevention, detection and treatment of CVD risk factors is urgently needed.     

Changes in coronary heart disease risk profile of adults with intellectual disabilities following a physical activity intervention

Background   Regular physical activity is one of the modifiable risk factors for coronary heart disease (CHD). With an increasing age profile and similar patterns of morbidity to the general population, persons with intellectual disabilities (ID) and their caregivers would benefit from data that indicate CHD risk factors. Knowledge of the CHD risk factors and the changes a physical activity intervention may have on theses risk factors will facilitate future intervention programmes.
Methods   A cohort of 100 men and women between the ages of 21 and 73 years with ID living in a community group home in the North-West Province of South Africa was recruited. A CHD risk profile was compiled by means of a questionnaire and physical assessment that included resting blood pressure, body mass index, non-fasting glucose and cholesterol and cardiorespiratory fitness. A 12-week physical activity intervention was then conducted 3 days/week after which the baseline measurements were repeated.
Results   The results indicated that 85% of the participants were inactive, while 67% were overweight and obese. Hypertension (6.1%) and smoking (6.1%) were relatively low in this population with ID. Glucose concentrations above the recommended cut-off values were observed in 28% of the participants. Total cholesterol concentrations above normal were measured in 23% of the participants. The physical activity intervention reduced inactivity to 50% and resulted in a significant increase in cardiorespiratory fitness and a decrease in percentage body fat in both men and women.
Conclusion   Inactivity is a major risk factor in this population with ID living in a community group setting. The implementation of the physical activity intervention significantly reduced the risk factors for CHD.     

Prevalence of visual and hearing impairment in a Dutch institutionalized population with intellectual disability

A screening of hearing and visual function was performed using clinical assessment methods in a Dutch institutionalized population of 672 people with mild to profound intellectual disability (ID). Because the studied population was not comparable to the total Dutch population with ID, subgroups were distinguished according to level of ID, age younger and older than 50 years, and the presence or absence of Down's syndrome (DS). The prevalences of both hearing and visual impairment were considerably increased in all subgroups, as compared with the general population. In the least affected group, i.e. those < 50 years with a mild or moderate ID by other causes than DS, the prevalences of hearing and visual impairment were 21% and 4%, respectively (as opposed to 2–7% and 0.2–1.9% in the general Dutch population <50 years, respectively). The prevalence of hearing impairment showed a sharp and highly significant increase in individuals with DS and subjects ≥ 50 years. To a lesser extent, young adults with severe or profound ID had an increased risk of hearing impairment. Visual impairment and blindness were specifically highly prevalent in people with severe or profound ID (51% < 50 years of age). Down's syndrome and an age ≥ 50 years were also significant risk factors for visual impairment. There was an alarmingly high prevalence of combined sensory impairment, especially in those with severe or profound ID (20%). Although hearing impairment had been diagnosed prior to this screen in 138 people and visual impairment in 65 individuals, a first diagnosis of hearing impairment was made in 128 subjects and of visual impairment in 90 cases. This highlights the tendency for sensory impairments to go unnoticed in people with ID, which is not restricted to those with severe or profound ID. Therefore, the present authors stress the importance of regular screening as outlined in the existing IASSID international consensus statement.     

A descriptive investigation of dysphagia in adults with intellectual disabilities

Background   Dysphagia has rarely been investigated in adults with intellectual disabilities (ID) despite being a serious condition affecting health and quality of life.
Method   This study collected information about 101 adults with ID, living in community settings, referred for an assessment of their eating and drinking. Ninety-nine people were classified as having dysphagia from clinical and videofluoroscopic assessments. This information was used to give an indication of the prevalence of dysphagia in adults with ID and identify the co-occurrence of physiological and anatomical indicators and associated negative health conditions.
Results   Details of the characteristics and conditions associated with dysphagia are provided. These include cerebral palsy, increased physical disability and cognitive impairment. A tentative indication of the current prevalence of dysphagia was found (8.15%).
Conclusion   Findings indicate that dysphagia is a significant issue for people with ID warranting further investigation. Practice implications detailed include increasing awareness of 'at risk' groups, changes in dysphagia with ageing, medication use and illness, and how findings can inform assessment and training.     

Unnoticed post-void residual urine volume in people with moderate to severe intellectual disabilities: prevalence and risk factors

Background   Increased post-void residual urine volume (PVR) is often seen in geriatric populations. People with intellectual disabilities (ID) have risk factors in common with these populations.
Aims   To investigate in adults with ID:

• • 

  Feasibility of portable ultrasound bladder scanning;
• • 

  Prevalence of PVR; and
• • 

  Relations with proposed risk factors for PVR.

Methods   In a cross-sectional design, PVR was measured using ultrasound scanning in 346 adults with moderate to severe ID aged 18–82 years. Relationship between increased PVR and the following risk factors was assessed: age, level of ID, gender, ambulancy, medication, chronic illnesses, incontinence and profound multiple disabilities (PMD). Acceptation of scanning and manageability were noted.
Results   Feasibility: All participants were cooperatively undergoing the ultrasound scan and all outcomes were sufficiently interpretable. Prevalence: PVR ≥ 150 mL was newly identified in 30/346 persons (8.7%, 95% confidence interval 5.92–12.14). Associations: Higher age ( P  = 0.001), laxative use ( P  = 0.001), chronic illnesses other than epilepsy ( P  = 0.005), profound ID ( P  = 0.008), incontinence ( P  = 0.048) and immobility ( P  = 0.005) are determinants that were associated with urinary retention.
Conclusions   The bladder ultrasound scan is a feasible method to identify increased PVR in adults with more severe levels of ID. The prevalence of PVR in adults is similar to prevalences found in the geriatric general population.     

Behavioural flexibility in individuals with Angelman syndrome, Down syndrome, non-specific intellectual disability and Autism spectrum disorder

Background   Little is known about behavioural flexibility in children and adults with Angelman syndrome and whether people with this syndrome have more or less problems in being behaviourally flexible as compared with other people.
Method   Behavioural flexibility scores were assessed in 129 individuals with Angelman syndrome using 11 items from the Behavioural Flexibility Rating Scale-Revised ( Green et al. 2007 ). Level of behavioural flexibility scores in individuals with Angelman syndrome ( N  = 129) was compared with that of people with non-specific intellectual disability (ID) ( N  = 90), Down syndrome ( N  = 398) and Autism spectrum disorder ( N  = 235).
Results   Comparative analyses show that individuals with Angelman syndrome were more flexible than those with non-specific ID ( P  < 0.001) and those with Autism spectrum disorder ( P  < 0.01). There were no differences in behavioural flexibility scores between individuals with Angelman syndrome and those with Down syndrome ( P  = 0.94).
Conclusion   It is concluded that individuals with Angelman syndrome are comparatively flexible in their behaviour.     

Behavioural and emotional difficulties in students attending schools for children and adolescents with severe intellectual disability

Background   For several decades, researchers and clinicians have been aware of an increased prevalence of psychiatric disorder in children with intellectual disability. However, there are few research studies exploring this issue.
Methods   The parents of 123 children attending schools for children with 'severe learning difficulties' completed the Developmental Behaviour Checklist (DBC) in order to identify those children with clinically significant behavioural and emotional problems. Comparisons were made with norms for the DBC and a range of child variables were investigated as possible correlates of disorder.
Results   Some 50.4% of the children scored above the cut-off on the DBC for psychiatric disorder. The child's severity of physical disability was related most strongly to parental ratings of behavioural and emotional problems. There were also effects for the child's age and the absence of Down's syndrome.
Conclusions   The present study confirms previous research findings of a high prevalence of behavioural and emotional difficulties amongst children with intellectual disability, and identifies a number of correlates of disorder which require further investigation.     

Verbal, visual, and spatio-sequential short-term memory: assessment of the storage capacities of children and teenagers with Down's syndrome

Background   It is recognized that individuals with Down's syndrome have a specific deficit in verbal short-term memory. On the other hand, non-verbal short-term memory seems to be preserved or even be a strong point for these persons. Nevertheless, the extent and specificity of the deficit must be determined. To do so, we carried out a research programme that allowed us to simultaneously assess various short-term memory systems in a developmental perspective, and to compare our participants' performance to that obtained by typically developing individuals of the same mental age.
Method   Three span tasks are used (auditory word span/visual patterns test/Corsi blocks task) with 54 children and teenagers with Down's syndrome and 54 typically developing children as control group. Participants were matched according to their cognitive level.
Results   For the auditory word span task, participants with Down's syndrome obtained performances significantly lower than those of the typically developing participants. On the other hand, compared with typically developing children, children and teenagers with Down's syndrome have a spatio-sequential span significantly higher for the lowest developmental ages. No significant differences were found for visual span.
Conclusions   Individuals with Down's syndrome exhibited a distinctive pattern of memory performance, in addition to their developmental specificities.     

Overweight and obesity in older people with intellectual disability

Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight, obesity and body fat percentage in older people with intellectual disability (ID) through measurement of Body Mass Index (BMI), waist circumference, waist-to-hip ratio (WHR) and skin fold thickness, and compare this with prevalence of overweight and obesity in the general population, and (2) the association of overweight and obesity with participant and treatment characteristics (gender, age, level of ID, Down syndrome, autism, independent living, smoking, (instrumental) activities of daily living ((I)ADL), physical activity and use of atypical antipsychotic medication) using regression analyses. In this cross-sectional study 945 persons, aged 50 and over with borderline to profound ID, living in central settings, in community settings and independently were included. Overweight and obesity were highly prevalent, with more obesity (26%) than in the general Dutch older population (10%) as measured by BMI, and 46-48% obesity as measured by waist circumference and WHR respectively. Women, people with Down syndrome, higher age, less severe ID, autism, people who are able to eat independently, preparing meals and doing groceries independently, people with physical inactivity and use of atypical antipsychotics were significantly more at risk of being overweight or obese. This merits specific actions by policy makers and clinical practice to improve health outcomes.     

High prevalence of obesity in ambulatory children and adolescents with intellectual disability

Background   Obesity prevalence is unusually high among adults with intellectual disability (ID). There is limited and conflicting evidence on obesity prevalence among ambulatory children and adolescents with ID. The present study aimed to estimate obesity prevalence in this group and to compare with population prevalence.
Methods   Survey of nine schools ( n  = 206, 150 boys) for ambulatory children and adolescents with mild-moderate ID in Scotland in 2007. Obesity was defined as measured body mass index (BMI) at or above the 95th percentile relative to UK 1990 reference data, and using the international definition based on BMI. Obesity prevalence observed was compared against Scottish population data on obesity prevalence from the most recent nationally representative survey.
Results   Obesity prevalence (at or above 95th percentile for BMI) was 36%, and was significantly higher among those attending secondary schools compared with primary schools ( P  < 0.01). Prevalence of obesity was significantly higher than in the general paediatric population in both boys and girls ( P  < 0.01).
Conclusions   The present study suggests that that obesity may be very prevalent among ambulatory children and adolescents with ID, and that increased obesity risk may begin in childhood.     

Chronic kidney disease in older people with intellectual disability: Results of the HA-ID study

With increasing longevity and cardiovascular events, chronic kidney disease may also become a significant problem in older people with intellectual disability (ID). We studied prevalence and associations of chronic kidney disease as part of the Healthy Ageing and Intellectual Disability (HA-ID) study, a large Dutch cross-sectional study among people with ID aged 50 years and over, using creatinine and cystatin-C measurement in plasma. Glomerular filtration rate (GFR) was calculated using the Modification of Diet in Renal Disease (MDRD) and Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI) equations. Equations based on creatinine (as the MDRD equation) may underestimate kidney dysfunction in people with sarcopenia, because low muscle mass leads to a low creatinine production. Therefore, also prevalence of chronic kidney disease was studied in the sarcopenic group, using different GFR equations. Prevalence of chronic kidney disease, among 635 participants, was 15.3%, which equals prevalence in the general Dutch population. In the group of participants with sarcopenia (n = 82), the CKD-EPI equation based on creatinine and cystatin-C gave a higher prevalence of chronic kidney disease than did the MDRD equation, but confidence intervals were very wide. Chronic kidney disease was associated with higher age, Down syndrome, obesity, hypercholesterolemia and hypothyroid disease.GFR should be measured in all older people with ID and polypharmacy, and in older people with ID and Down syndrome as part of the regular health checks. Moreover, if sarcopenia is present and information on GFR is required, this should not be measured based on creatinine only, but additional measures, such as cystatin-C, should be taken into account.     

Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives

Background   Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and also examined their perceptions of impediments to achieving sexual autonomy.
Method   Thirty-two participants (20 male, 12 female) attending an ID service participated in focus groups delineated by gender and age group (13–17 years; 18–30 years; 31+ years).
Results   Analysis of the focus groups showed that service users, especially those over the age of 18 years, had an understanding of their sexual rights but also identified a number of social and cultural barriers that they felt prevent them from achieving sexual autonomy. Those under the age of 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy and sexual anatomy, but aspired to relationships and marriage similar to those over the age of 18 years. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits of such education appeared most enduring for those over 18 years.
Conclusion   Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID.     

Peripheral arterial disease in older people with intellectual disability in The Netherlands using the ankle-brachial index: Results of the HA-ID study

Older people with an intellectual disability (ID) have been shown to have similar to increased cardiovascular risks as compared to the general population. Peripheral arterial disease (PAD), atherosclerosis distal from the aortic bifurcation, is associated with increased cardiovascular morbidity and mortality. The prevalence of PAD has not been investigated in this population. Therefore, the aim of the present study was to determine the prevalence of PAD in older people with ID in The Netherlands, the rate of prior diagnoses, and correlations with participant characteristics, and to compare the prevalence with PAD in the general Dutch population. 771 people aged 50 years and over participated in ankle-brachial index (ABI) measurement as part of a multi-centre cross-sectional study (HA-ID study). PAD was defined as an ABI < 0.9. After excluding those, who met the exclusion criteria, 629 participants remained. PAD was present in 20.7% of the participants and 97% had not been diagnosed before. People with higher age, smokers and people who lived in central settings, walked with support and were more dependent in activities of daily living were more at risk of PAD. Prevalence of PAD is higher than in the general population (17.4% of 562 eligible participants with ID, as compared to 8.1% of 917 Dutch participants of the PANDORA study, a pan-European study into the prevalence of PAD) through all age groups. Because the high prevalence of PAD implies a serious health risk for older people with ID, we recommend that ankle-brachial index measurement is to be routinely performed as part of the cardiovascular risk management in this group.     

Prevalence of migraine, tension-type headache and trigeminal neuralgia in multiple sclerosis

Background:  Prevalence rates of headache in multiple sclerosis (MS) patients varied widely in recent studies. This study aimed to investigate the 1 year prevalence of headache in MS compared with the general population.
Methods:  Population-based case–control study in Germany.
Results:  We included 491 patients with definite MS (68% female, mean age 45.3 years, 63.7% relapsing remitting MS, mean Expanded Disability Status Scale (EDSS) 3.2, 106 treated with interferon-β, 53 with glatiramer acetate, 271 untreated) and 447 age and gender matched controls. Headache was diagnosed with a validated questionnaire according to the International Headache Society Criteria. Headache prevalence was 56.2% (tension type headache 37.2%, migraine 24.6%). Headache prevalence rates did not differ from controls. Headache was not associated with disability or treatment. Trigeminal neuralgia was found in 6.3% of MS cases.
Conclusion:  Results suggest that headache in MS patients reflects comorbidity in most conditions.     

Screening for aneurysm of the abdominal aorta: prevalence in patients with stroke or TIA

Background and purpose:  Population screening for aneurysms of the abdominal aorta (AAA) is still not implemented in any country, despite proven benefit both in decreased mortality and in cost effectiveness. Detecting a subpopulation with higher prevalence of AAA may alter this situation.
Methods:  Between 2002 and 2005, all patients with a stroke or transient ischaemic attack (TIA) admitted to the department of Neurology of a community-based hospital were classified according to the Toast criteria and enrolled in a prospective study to assess the diameter of the abdominal aorta. The diameter was assessed by ultrasonography. A written questionnaire and blood tests were used to assess risk factors.
Results:  The prevalence of AAA amongst the 499 screened patients in the study was 5.8% [95% confidence interval (CI) 5.6–6.0%]. Of the risk factors or Toast criteria, only male gender and age over 59 years correlated significantly with AAA. In the subgroup of 235 men aged over 59 years, the prevalence of AAA was 11.1% (95% CI 10.4–11.8%).
Conclusion:  The prevalence of AAA in men over 59 years of age presenting with a stroke or TIA is nearly twofold increased (11.1%) compared with all patients. Therefore, screening for AAA in this subgroup of patients seems beneficial. However, further studies are needed to confirm this finding and to explore the clinical benefit and cost effectiveness.     

Asthma, smoking and BMI in adults with intellectual disabilities: a community-based survey

Background   Recent research evidence from the general population has shown that tobacco smoking and raised body mass index (BMI) are associated with worse asthma outcomes. There are indications that asthma morbidity and mortality may be higher among people with intellectual disabilities (ID) than the general population, but the reason for this is not known. This is the first study to investigate the extent of smoking and higher than recommended BMI among adults with ID and a diagnosis of asthma.
Method   Health-related data for 1097 adults with ID were collected from 28 primary care practices in Bristol, UK.
Results   Prevalence of asthma in this sample of adults with ID was 12% which was much higher than among the general population living in the region. The 132 patients with asthma were found to be nearly twice as likely to be current smokers as patients with ID who did not have asthma (29.5% vs. 15.6%). Smoking rates were higher among men than women with asthma (35.7% vs. 22.6%). Patients diagnosed with asthma were also more likely to be obese (BMI ≥ 30) than patients with ID but no asthma (42.7% vs. 31.6%). Obesity was particularly a problem among women with asthma as more than half (52.1%) had a BMI ≥ 30.
Conclusions   A very high proportion of patients with ID and asthma were found to be current smokers and/or obese. There is now strong research evidence that both smoking and obesity are implicated in the development of asthma and associated with worse disease outcomes. This study highlights the urgent need for programmes aimed at providing support for people with ID and asthma to stop smoking and to achieve a healthy body weight.     

Autism spectrum disorders in genetic syndromes: implications for diagnosis, intervention and understanding the wider autism spectrum disorder population

Background   An emerging literature on behavioural phenotypes has highlighted apparent associations between autism spectrum disorders (ASDs) or ASD-related phenomenology and a number of different genetically determined syndromes.
Method   A systematic review of the current literature regarding the association with ASD and ASD characteristics was conducted in the following syndrome groups: Fragile X, Rett, Tuberous Sclerosis Complex, Down, Angelman, CHARGE and Phenylketonuria. Specific consideration was given to the role of intellectual disability in assessing the association between ASD and these syndrome groups.
Results   The review highlights that while formal diagnostic assessments may indicate an association between ASD and specific syndrome groups, detailed investigation has revealed subtle but qualitative differences in the presentation of ASD-like phenomenology in particular syndrome groups. The degree of ID of the individual clearly has a role to play with regard to the development and presentation of ASD-like characteristics, and caution should be taken when assessing ASD symptomatology in genetically determined syndromes associated with severe ID. However, degree of ID cannot solely account for the heightened prevalence of ASD characteristics in some specific syndrome groups.
Conclusions   There is a need for caution in interpreting the significance of superficial similarities between ASD and the behavioural phenotypes of certain genetically determined syndromes. However, recognition of ASD-like characteristics (even where a true diagnosis of ASD may not be relevant) in individuals with genetic syndromes is crucial in ensuring that individuals receive appropriate behavioural management and educational placement. Further research in this field requires fine-grained investigation of behavioural phenomenology within individual syndrome groups.     

The significance of neighbours: views and experiences of people with intellectual disability on neighbouring

Background   People with intellectual disability (ID) who live in regular neighbourhoods have experiences with their neighbours, which are important to understand when studying social integration.
Method   This study describes and analyses the opinions on, and experiences with, neighbour relationships of 39 people with ID living in neighbourhood housing facilities.
Results   We found that, while the views of people with ID on 'good neighbouring' were consistent with 'neighbouring' described in sociological literature, their experiences may be influenced by an organisational context, the tendency to formalise relationships and apprehension towards meeting unfamiliar people.
Conclusion   Understanding influential factors to neighbouring for people with ID may shed light on the processes involved in social integration of people with ID at a neighbourhood level. This paper contributes to understanding the opinions of people with ID on satisfactory neighbourhood relationships, and explores opportunities to improve them.     

Significant improvement in sleep in people with intellectual disabilities living in residential settings by non-pharmaceutical interventions

Background   Although about 15 to 50 percent of people with intellectual disabilities (ID) living in residential settings suffer from sleep problems, scant attention is paid to these problems. Most available studies focus on pharmaceutical solutions. In this study we focus on improving sleep in people with intellectual disabilities living in residential settings by non-pharmaceutical interventions.
Method   The design is a multiple case study using actigraphy. Following a baseline measurement of people with ID, we recommended an intervention such as bedtime scheduling. This was followed by an effect measurement.
Results   Sleep efficiency, sleep latency and rising latency improved significantly. The time spent in bed also decreased significantly and the hours of sleep while in bed increased significantly.
Conclusion   For people with ID, sleep can be improved by non-pharmaceutical interventions. A multidisciplinary approach is helpful in selecting an adequate intervention.