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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]

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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]

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]

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]

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]

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

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

Based on a systematic review, psychometric characteristics of currently available instruments on motor abilities of children with disabilities were evaluated, with the aim to identify candidates for use in children with severe multiple (intellectual and motor) disabilities. In addition, motor abilities are essential for independent functioning, but are severely compromised in these children. The methodological quality of all studies was evaluated with the Consensus Based Standards for the Selection of Health Status Measurement Instruments (COSMIN) Checklist; overall levels of evidence per instrument were based on the Cochrane Back Review Group strategy. As a result, 18 studies with a total of eight instruments, developed for children with cerebral palsy (CLA, GMFM-88 and LE85), spinal muscular atrophy (MHFMS), neuromuscular diseases (MFM), disabilities 0-6 years (VAB, WeeFIM), and one developed specifically for children with severe multiple disabilities (TDMMT) were found. Strong levels of evidence were found for construct validity of LE85 and MFM and for responsiveness of WeeFIM, but reliability studies of these instruments had a limited methodological quality. Up to now studies of the TDMMT resulted in limited and unknown evidence for structural validity due to the poor methodological quality of reliability studies. In a next step, the clinical suitability of the instruments for children with severe multiple disabilities will be evaluate. [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.Implications for rehabilitationStrikingly low levels of physical fitness were seen in children and adolescents with moderate to severe intellectual disabilities.This vulnerable group is in need of appropriate interventions to increase their physical fitness levels.Increasing the physical activity is a potential component in these interventions.Improving motor development will most likely lead to improved physical fitness as well.

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

We aim to provide insight into the cause-specific mortality of older adults with intellectual disability (ID), with and without Down syndrome (DS), and compare this to the general population. Immediate and primary cause of death were collected through medical files of 1,050 older adults with ID, 5 years after the start of the Healthy Ageing and Intellectual Disabilities (HA-ID) study. During the follow-up period, 207 (19.7%) participants died, of whom 54 (26.1%) had DS. Respiratory failure was the most common immediate cause of death (43.4%), followed by dehydration/malnutrition (20.8%), and cardiovascular diseases (9.4%). In adults with DS, the most common cause was respiratory disease (73.3%), infectious and bacterial diseases (4.4%), and diseases of the digestive system (4.4%). Diseases of the respiratory system also formed the largest group of primary causes of death (32.1%; 80.4% was due to pneumonia), followed by neoplasms (17.6%), and diseases of the circulatory system (8.2%). In adults with DS, the main primary cause was also respiratory diseases (51.1%), followed by dementia (22.2%).

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

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

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

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

Due to the limited cognitive and communicative abilities of adults with intellectual disabilities (ID), current treatment options for depression are often limited to lifestyle changes and pharmacological treatment. Bright light therapy (BLT) is an effective intervention for both seasonal and non-seasonal depression in the general population. BLT is an inexpensive, easy to carry out intervention with minimal side effects. However, knowledge on its anti-depressant effect in adults with ID is lacking. Obstacles in realizing a controlled intervention study in this particular study population may have contributed to this lack. To study the effect of BLT on depression in this population, it is necessary to successfully execute a multicenter randomized controlled trial (RCT). Therefore, the study protocol and the management of anticipated obstacles regarding this trial are presented., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

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

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

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

As a result of increased life expectancy of persons with intellectual disabilities, the number of ageing persons with intellectual disability has increased rapidly. As a result of changed attitudes in health care, the majority of people aged 50 years or more now live in the community and make use of the standard general and specialist healthcare services. Except in people with Down syndrome, primary ageing occurs at a normal age in this population. Nevertheless, an increased age-related vulnerability can be observed, occurring earlier than in the general population. Although scientific research is still scarce, the following factors threatening health can be distinguished: functional impairments, multimorbidity, unhealthy lifestyle, incomplete detection of risk factors for cardiovascular disease, insufficient participation in population screening, missed diagnoses as a result of lack of subjective symptoms. Reliable information on health status of ageing people with an intellectual disability will become available in the next few years based on current Dutch research. Following several changes in the rules of the Dutch Healthcare Authority (NZa) it is possible for general practitioners to refer those patients with an intellectual disability living in the community to a doctor specialised in intellectual disability medicine.