Prevalence of constipation in people with intellectual disabilities:a systematic review

Background. Constipation can lead to serious health issues and death. This systematic review summarises international research pertaining to the prevalence of constipation in people with intellectual disability. Method. Studies published from 1990 to January 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests, and cross-citations. Studies were reviewed narratively. Results. 31 studies were identified. Constipation rates of 50% or more were reported in 14 studies; 21 studies reported rates over 33%. Based on the most representative study, over 25% of people with intellectual disability received a repeat prescription for laxatives in one year, compared to 0.1% of people without intellectual disability. Constipation was more common in those with cerebral palsy and profound intellectual disability, and associated with immobility but not age. Conclusion. Constipation is a significant issue for people with intellectual disability across the life course and should be actively considered as a diagnosis in this population

Obesity in British children with and without intellectual disability:cohort study

Background Reducing the prevalence of and inequities in the distribution of child obesity will require developing interventions that are sensitive to the situation of ‘high risk’ groups of children. Children with intellectual disability appear to be one such group. We aimed to estimate the prevalence of obesity in children with and without intellectual disability in a longitudinal representative sample of British children and identify risk factors associated with obesity at age 11. Methods Information was collected on a nationally representative sample of over 18,000 at ages 9 months, 3, 5, 7 and 11 years. We used UK 1990 gender-specific growth reference charts and the LMS Growth programme to identify age and gender-specific overweight and obesity BMI thresholds for each child at ages five, seven and eleven years. Results Children with intellectual disabilities were significantly more likely than other children to be obese at ages five (OR=1.32[1.03-1.68]), seven (OR=1.39[1.05-1.83]) and eleven (OR=1.68[1.39-2.03]). At ages five and seven increased risk of obesity among children with intellectual disabilities was only apparent among boys. Among children with intellectual disability risk of obesity at age eleven was associated with persistent maternal obesity, maternal education, child ethnicity and being bullied at age five. Conclusions Children with intellectual disability are a high-risk group for the development of obesity, accounting for 5-6% of all obese children. Interventions to reduce the prevalence and inequities in the distribution of child obesity will need to take account of the specific situation of this group of children

Estimating the Need for Social Care Services for Adults with Disabilities in England 2012-2030

Executive summary The aim of the project was to estimate changes in the need for social care services for adults with disabilities in England between 2012 and 2030. The project built upon and extended our previous work on estimating future need for social care services among adults with learning disabilities. The latest update of our previous work suggested that there will be sustained growth in the need for social care services for adults with learning disabilities over the time period 2011-2030, with estimated average annual increases varying from 1.2% to 5.1% (average 3.2%). Our previous approach was, however, based on a number of assumptions, some of which we believe to be highly robust, some less so. The most critical source of uncertainty in the model was in the validity of our estimates of the likely eligibility for social care services for new entrants at different levels of ‘need’, especially for potential new entrants with less severe disabilities. In our previous work we used estimates developed through a process of consultation with relevant stakeholders (primarily disabled people’s organisations and field agencies). One of the key aims of the present project was to test out and refine these assumptions through field-based research. Other aims of the present project were to: • update the estimates based on revised information; • extend the model to other adults with disabilities. Our proposed primary research involved attempting to collect information on the assessed level of eligibility for samples of 50 children aged 14-16 identified as having SEN in 10 CASSRs. In order to compensate for potential drop out we initially recruited 18 CASSRs who all indicated a strong commitment to participating in the project. Unfortunately, the fieldwork took place during 2010/11, a period of unprecedented turmoil within CASSRs in England. Despite extending the period of data collection by several months, only six CASSRs were able to provide any data and only two CASSRs were able to provide data on the target sample of 50 children. As a result, we were only able to collect information on 223 young people (45% of the target sample). Given the difficulties we encountered in our field work, we agreed with NIHR SSCR that we would also undertake some exploratory analyses of the association between SEN and the experimental disability statistics collected by DfE in Spring 2011. The aim of these analyses was to explore the relationship between SEN and disability (as defined under the Equality Act 2010) and to determine whether this information could be used to strengthen the estimates of assessed level of need for adult social care services. Unfortunately, the results of these analyses suggested that the disability data collected by the DfE were subject to a number of serious biases associated with social exclusion and socio-economic position that made their use untenable in the present project. We were, however, able to use the new field-generated estimates of eligibility to: (1) update our previous work on estimating future need for adult social care services for people with learning disabilities; and (2) extend this work to estimating future need for adult social care services for people with physical disabilities (including sensory impairment) in the age range 19-30. To estimate future need beyond this age point would require making important assumptions about the annual age-specific incidence (onset) of serious physical and sensory impairments in adults. There is, at present, insufficient information to make these assumptions with any degree of confidence. However, such information will become available in the near future with the release of Wave 2 data from the Office for Disability Issues’ longitudinal Life Opportunities Survey.1 All of the scenarios included in our estimation procedures suggested sustained growth in the need for social care services for adults with physical or learning disabilities over the time period 2012-2030. • For younger adults with physical disabilities compound annual growth rates vary from 1.8% to 6.5%. A ‘no growth’ scenario in the number of users of adult social care services for young adults with physical disabilities could only be achieved by either cutting services to existing users or by rationing access to services to young adults with physical disabilities with ‘critical’ need and 61% of those with ‘substantial’ need. • For adults with learning disabilities compound annual growth rates vary from 2.0% to 2.7%. A ‘no growth’ scenario in the number of users of adult social care services for adults with learning disabilities could only be achieved by either cutting services to existing users or by rationing access to services to young people with learning disabilities with ‘critical’ need and just 25% of those with substantial need. As we have argued above, rationing social care to people with critical or substantial needs is inconsistent with the policy objective strongly emphasised in Putting People First2 of adopting a more preventative approach to social care.3-5 There are a number of factors that would have an impact on future need that we were not able to take into account. These included: • Effects due to international migration; • Changes in the incidence of disability over time; • Changes in mortality rates among people with disabilities over time. It must be stressed that our predictions are based on estimates of ‘need’ rather than ‘demand’. Changes in demand are likely to outstrip changes in need due to a variety of factors combining to reduce the capacity of informal support networks to provide care, networks that have primarily relied on the unpaid labour of women. These factors include: • Increases in lone parent families6 • Increasing rates of maternal employment6 • Increases in the percentage of older people with learning disabilities (whose parents are likely to have died or be very frail)7 8 • Changing expectations among families regarding the person’s right to an independent life

Self-Reported Participation in Sport/Exercise Among Adolescents and Young Adults With and Without Mild to Moderate Intellectual Disability

Physical inactivity is a leading risk factor for mortality. Adults with intellectual disability are extremely inactive, but less is known about physical activity levels in children and youth with intellectual disability. This paper examines the participation by adolescents and young adults with and without mild to moderate intellectual disability in sport/exercise. Methods: Secondary analysis was undertaken of Next Steps, an annual panel study that followed a cohort from early adolescence into adulthood. Participants with mild to moderate intellectual disability were identified through data linkage with educational records. Results: Sport/exercise participation rates were consistently lower for adolescents and young people with mild to moderate intellectual disability than for their peers without intellectual disability. Matching participants on between-group differences in exposure to extraneous risk factors did not impact on these between-group differences in participation in sport/exercise. Conclusion: The results support limited existing evidence regarding the low level of participation of children and young people with intellectual disability in sport/exercise compared with their peers. Future work on promoting sport/exercise and physical activity in children and young people with intellectual disability may play a role in helping to reduce the health inequalities experienced by people with intellectual disability

Predictors of self-reported alcohol use and attitudes toward alcohol among 11 year old British children with and without intellectual disability

Background Reducing harmful levels of alcohol consumption among children is an important public health concern internationally and in many high income countries. Little is known about levels and predictors of alcohol use among children with intellectual disability. Method Secondary analysis of child self-report data at age 11 years collected in the UK’s Millennium Cohort Study. Results Children with intellectual disability were significantly more likely to: have used alcohol in the last four weeks; to have had five or more alcoholic drinks on one occasion; to have had five or more alcoholic drinks or been intoxicated on one occasion; to have more positive attitudes about the psychological and social benefits of drinking; to have less negative attitudes about the social and physical costs of drinking. Potentially harmful levels of drinking (intoxication or 5+ alcoholic drinks on one occasion) among children with intellectual disability were associated with child smoking, having friends who use alcohol, reporting that drinking makes it easier to make friends and reporting that drinking reduces worrying. Children with intellectual disability accounted for 9% of all children with potentially harmful levels of drinking. Conclusion Public health interventions to reduce potentially harmful drinking among children in general must recognise that children with intellectual disability are a potentially high risk group and ensure that interventions are appropriately adjusted to take account of their particular needs and situation. Future research in this area is needed to untangle the causal pathways between attitudes toward alcohol and alcohol use among children with intellectual disability and the extent to which levels of alcohol use and predictors of alcohol use may be moderated by severity of intellectual disability

Self-reported smoking, alcohol and drug use among adolescents and young adults with and without mild to moderate intellectual disability

Background: People with intellectual disability may be at elevated risk of adverse consequences of substance use. This study outlines the prevalence of, and factors associated with, substance use in young people with and without intellectual disability. Method: Secondary analysis was undertaken of the Next Steps annual panel study, which follows a cohort through adolescence into adulthood and contains self-report data on smoking, alcohol and drug use. Results: Young people with mild to moderate intellectual disabilities were generally less likely to use substances than young people without intellectual disabilities. The pattern of association with socio-demographic factors was mixed. Overall, matching participants on between-group differences in exposure to extraneous risk factors did not impact on between-group differences in substance use. Conclusions: Young people with mild to moderate intellectual disability are less likely to use substances than their non-disabled peers. Prevention and intervention programs need to be adapted for those in this population who do use substances

Postural care for people with intellectual disabilities and severely impaired motor function:a scoping review

Background Poor postural care can have severe and life-threatening complications. This scoping review aims to map and summarize existing evidence regarding postural care for people with intellectual disabilities and severely impaired motor function. Method Studies were identified via electronic database searches (MEDLINE, CINAHL, PsycINFO and Web of Science) covering January 1990 to March 2016, and email requests to researcher networks. Results were collated via descriptive numerical summary of studies and thematic analysis. Results Twenty-three studies were identified and summarized narratively in relation to three themes: characteristics and prevalence, interventions and service related issues. The evidence base is small with significant gaps. Lack of evidence for night-time positioning equipment and 24-hr postural care needs to be addressed urgently. Conclusion Future research should be clearly directed towards ascertaining how best postural care interventions can be employed to help improve the health and quality of life of people with intellectual disabilities

Constipation management in people with intellectual disability:A systematic review

Background Constipation can lead to serious health issues and death. This systematic review summarizes international research pertaining to the management of constipation in people with intellectual disability. Method Studies published from 1990 to 2017 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes. Results Eighteen studies were reviewed in relation to three themes: laxative receipt; interventions (dietary fibre, abdominal massage and macrogol); and staff issues (knowledge and training). Laxative polypharmacy was common. Studies report positive results for dietary fibre and abdominal massage although study quality was limited. Conclusion The main management response to constipation in people with intellectual disability is laxative use despite limited effectiveness. An improved evidence base is required to support the suggestion that an individualized, integrated bowel management programme may reduce constipation and associated health conditions in people with intellectual disability

People with intellectual disabilities and dysphagia

Purpose: Dysphagia (difficulties in eating, drinking or swallowing) is associated with serious health complications and psychosocial sequelae. This review aims to summarise the state of the evidence regarding dysphagia in people with intellectual disabilities (excluding prevalence), identify gaps in the evidence base and highlight future research priorities. Method: Studies published from 1 January 1990 to 19 July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross citations. Studies were reviewed narratively in relation to identified themes. Results: A total of 35 studies were included in the review. Themes identified were as follows: health conditions associated with dysphagia; mortality; health service use; practice and knowledge in supporting people with intellectual disabilities and dysphagia; intervention effectiveness and quality of life. Dysphagia is associated with respiratory infections and choking and may be under-recognised. Silent aspiration is common and may go unnoticed. Management practices exist, but there are few intervention studies and no randomised controlled trials (RCTs), and hence, the effectiveness of these is currently unclear. Conclusion: Dysphagia is a key concern in relation to people with intellectual disabilities. There is urgent need for research on the management of dysphagia in people with intellectual disabilities, including mealtime support offered, positioning, dietary modification and impact on wellbeing. Implications for Rehabilitation Dysphagia is common in people with intellectual disabilities, associated with serious health risks and may be under-recognised. Caregivers of people with intellectual disabilities should be educated about dysphagia. There is an urgent need for research on improving the management of dysphagia in people with intellectual disabilities. Improved recognition and management of dysphagia may reduce the occurrence of associated health conditions and reduce hospital admissions and premature death in people with intellectual disabilities

Genetic dysregulation of endothelin-1 is implicated in coronary microvascular dysfunction.

AIMS: Endothelin-1 (ET-1) is a potent vasoconstrictor peptide linked to vascular diseases through a common intronic gene enhancer [(rs9349379-G allele), chromosome 6 (PHACTR1/EDN1)]. We performed a multimodality investigation into the role of ET-1 and this gene variant in the pathogenesis of coronary microvascular dysfunction (CMD) in patients with symptoms and/or signs of ischaemia but no obstructive coronary artery disease (CAD). METHODS AND RESULTS: Three hundred and ninety-one patients with angina were enrolled. Of these, 206 (53%) with obstructive CAD were excluded leaving 185 (47%) eligible. One hundred and nine (72%) of 151 subjects who underwent invasive testing had objective evidence of CMD (COVADIS criteria). rs9349379-G allele frequency was greater than in contemporary reference genome bank control subjects [allele frequency 46% (129/280 alleles) vs. 39% (5551/14380); P = 0.013]. The G allele was associated with higher plasma serum ET-1 [least squares mean 1.59 pg/mL vs. 1.28 pg/mL; 95% confidence interval (CI) 0.10-0.53; P = 0.005]. Patients with rs9349379-G allele had over double the odds of CMD [odds ratio (OR) 2.33, 95% CI 1.10-4.96; P = 0.027]. Multimodality non-invasive testing confirmed the G allele was associated with linked impairments in myocardial perfusion on stress cardiac magnetic resonance imaging at 1.5 T (N = 107; GG 56%, AG 43%, AA 31%, P = 0.042) and exercise testing (N = 87; -3.0 units in Duke Exercise Treadmill Score; -5.8 to -0.1; P = 0.045). Endothelin-1 related vascular mechanisms were assessed ex vivo using wire myography with endothelin A receptor (ETA) antagonists including zibotentan. Subjects with rs9349379-G allele had preserved peripheral small vessel reactivity to ET-1 with high affinity of ETA antagonists. Zibotentan reversed ET-1-induced vasoconstriction independently of G allele status. CONCLUSION: We identify a novel genetic risk locus for CMD. These findings implicate ET-1 dysregulation and support the possibility of precision medicine using genetics to target oral ETA antagonist therapy in patients with microvascular angina. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03193294.The Wellcome Trust 107715/Z/15/Z