Freya Tyrer

Body Mass Index in Adults with Intellectual Disability: Distribution, Associations and Service Implications--A Population-Based Prevalence Study.

BACKGROUND Previous studies of weight problems in adults with intellectual disability (ID) have generally been small or selective and given conflicting results. The objectives of our large-scale study were to identify inequalities in weight problems between adults with ID and the general adult population, and to investigate factors associated with obesity and underweight within the ID population. METHODS We undertook a population-based prevalence study of 1119 adults with ID aged 20 and over on the Leicestershire Learning Disability Register who participated in a programme of universal health checks and home interviews with their carers. We performed a cross-sectional analysis of the register data and compared the observed and expected prevalences of body mass index categories in the ID and general populations using indirect standardisation for age. We used logistic regression to evaluate the association of a range of probable demographic, physical, mental and skills attributes with obesity and underweight. RESULTS In those aged 25 and over, the standardised morbidity ratio (SMR) for obesity was 0.80 (95% CI 0.64-1.00) in men and 1.48 (95% CI 1.23-1.77) in women. The SMR for underweight was 8.44 (95% CI 6.52-10.82) in men and 2.35 (95% CI 1.72-3.19) in women. Among those aged 20 and over, crude prevalences were 20.7% for obesity, 28.0% for overweight, 32.7% for normal weight and 18.6% for underweight. Obesity was associated with living independently/with family, ability to feed/drink unaided, being female, hypertension, Down syndrome and the absence of cerebral palsy. Underweight was associated with younger age, absence of Down syndrome and not taking medication. CONCLUSION Obesity in women and underweight in both men and women was more common in adults with ID than in the general population after controlling for differences in the age distributions between the two populations. The associated factors suggest opportunities for targeting high-risk groups within the ID population for lifestyle and behaviour modification.

Psychiatric service use and psychiatric disorders in adults with intellectual disability.

BACKGROUND UK policies aim to facilitate access to general psychiatric services for adults with intellectual disability (ID). If this is to be achieved, it is important to have a clear idea of the characteristics and proportion of people with ID who currently access specialist psychiatric services and the nature and extent of psychiatric disorders in this population. METHODS A cross-sectional study was carried out on all adults with ID using specialist services in Leicestershire and Rutland, UK, between 2001 and 2006. Characteristics of individuals seen by psychiatric services and the nature and prevalence of psychiatric disorders were investigated. RESULTS Of 2711 adults identified, 1244 (45.9%) accessed specialist psychiatric services at least once during the study period. Individuals attending psychiatric services were more likely to be older and to live in residential settings; they were less likely to be south Asian or to have mild/moderate ID. The prevalence of psychiatric disorders among the total study population was 33.8%; the most common disorders were behaviour disorder (19.8%) and autistic spectrum disorders (8.8%). Epilepsy was highly prevalent (60.8%) among those attending psychiatric services without a mental health diagnosis. Behaviour disorders and autistic spectrum disorders were more common in men and in adults with severe/profound ID, whereas schizophrenia and organic disorders were more common in women and in adults with mild/moderate ID. Depression was also more common in women with ID. CONCLUSIONS Psychiatric disorders and specialist health problems are common among adults with ID and the profile of psychiatric disorders differs from that found in general psychiatry. Close collaboration between general and specialist service providers is needed if the current move towards use of general psychiatric services in this population is to be achieved. The measures should include a clear care pathway for people with ID and mental health problems to facilitate the smooth transfer of patients between specialist and generic mental health services and arrangements for joint working where input from both services is required. The commissioning framework for such processes should be in place with appropriate pooling of resources.

Cause-Specific Mortality and Death Certificate Reporting in Adults with Moderate to Profound Intellectual Disability.

BACKGROUND The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population-based study to explore cause-specific mortality in adults with ID compared with the general population. METHODS Cause-specific standardised mortality ratios (SMRs) and exact 95% confidence intervals were calculated by age and sex for adults with moderate to profound ID living in the unitary authorities of Leicester, Leicestershire and Rutland, UK, between 1993 and 2006. Causes of death were also studied to determine how often ID and associated conditions, such as Down syndrome, were mentioned. RESULTS A total of 503 (17% of population) adults with ID died during the 14-year study period (30 144 person-years). Relatively high cause-specific mortality was seen for deaths caused by congenital abnormalities (SMR = 8560), diseases of the nervous system and sense organs (SMR = 1630), mental disorders (other than dementia) (SMR = 1141) and bronchopneumonia (SMR = 647). Excess deaths were also seen for diseases of the genitourinary system or digestive system, cerebrovascular disease, other respiratory infections, dementia (in men only), other circulatory system diseases (in women only) and accidental deaths (in women only). Two-fifths (n = 204; 41%) of deaths recorded in adults with ID mentioned ID or an associated condition as a contributing cause of death. CONCLUSIONS Strategies to reduce inequalities in people with ID need to focus on decreasing mortality from potentially preventable causes, such as respiratory infections, circulatory system diseases and accidental deaths. The lack of mention of ID on death certificates highlights the importance of effective record linkage and ID reporting in health and social care settings to facilitate the governments confidential inquiry into causes of death in this population.

Brief report: Aggressive challenging behaviour in adults with intellectual disability following community resettlement

BACKGROUND Aggressive challenging behaviour is common in adults with intellectual disability (ID) in long-term care facilities. The governments commitment to the closure of all facilities in England has led to concerns over how to manage this behaviour in the community. The aim of this study was to assess changes in aggressive challenging behaviour and psychotropic drug use in adults with ID following resettlement using a person-centred approach. METHOD The Modified Overt Aggression Scale was administered to carers of 49 adults with ID prior to discharge from a long-stay hospital and 6 months and 1 year after community resettlement. RESULTS All areas of aggressive challenging behaviour reduced significantly between baseline and 6 months following resettlement (P < 0.001). This reduction remained (but did not decrease further) at 1-year follow-up. CONCLUSIONS Further work is needed to evaluate the role of environmental setting on aggressive challenging behaviour in adults with ID.

Urban-Rural Differences in the Nature and Prevalence of Mental Ill-Health in Adults with Intellectual Disabilities.

BACKGROUND In the general population there are statistically significant urban-rural differences in the rate of common mental disorders. In people with intellectual disability (ID) no study has attempted to address this issue. AIMS To compare the prevalence of mental illness, autism spectrum disorder (ASD) and behaviour disorder in people with ID living in urban areas with those living in rural areas. METHODS Cross-sectional study of 2713 individuals registered with an ID service. Participants were assigned to urban or rural groups using the Department for Environment Food and Rural Affairs rural/urban local authority classification for their district. The main outcome variable was a clinical diagnosis of mental illness, ASD and behaviour disorder. Differences between diagnoses of mental illness in urban and rural areas were evaluated using the chi-squared test for the difference in two independent proportions. RESULTS No differences were observed between gender, age and level of ID of service users based on their place of residence. But more people from an ethnic minority background were living in urban areas than rural areas. No differences were observed in the overall prevalence of mental illness by place of residence. However, the results showed that ASD was more common in people living in rural areas. CONCLUSIONS We found these results surprising and at odds with the majority of studies carried out in the general population and propose several reasons for the differences found. We believe that the results and further studies in this area will help inform health service provision for those with ID who live in different geographical areas.

Barriers and Facilitators to Healthy Lifestyle Changes in Minority Ethnic Populations in the UK: a Narrative Review

Minority ethnic populations experience a disproportionate burden of health inequalities compared with the rest of the population, including an increased risk of type 2 diabetes (T2DM). The purpose of this narrative review was to explore knowledge and attitudes around diabetes, physical activity and diet and identify barriers and facilitators to healthy lifestyle changes in minority ethnic populations in the UK. The narrative review focused on three key research topics in relation to barriers and facilitators to healthy lifestyle changes in minority adult ethnic populations: (i) knowledge and attitudes about diabetes risk; (ii) current behaviours and knowledge about physical activity and diet; and (iii) barriers and facilitators to living a healthier lifestyle. Nearly all of the studies that we identified reported on South Asian minority ethnic populations; we found very few studies on other minority ethnic populations. Among South Asian communities, there was generally a good understanding of diabetes and its associated risk factors. However, knowledge about the levels of physical activity required to gain health benefits was relatively poor and eating patterns varied. Barriers to healthy lifestyle changes identified included language barriers, prioritising work over physical activity to provide for the family, cultural barriers with regard to serving and eating traditional food, different perceptions of a healthy body weight and fear of racial harassment or abuse when exercising. Additional barriers for South Asian women included expectations to remain in the home, fear for personal safety, lack of same gender venues and concerns over the acceptability of wearing ‘western’ exercise clothing. Facilitators included concern that weight gain might compromise family/carer responsibilities, desire to be healthy, T2DM diagnosis and exercise classes held in ‘safe’ environments such as places of worship. Our findings suggest that South Asian communities are less likely to engage in physical activity than White populations and highlight the need for health promotion strategies to engage people in these communities. There is a gap in knowledge with regard to diabetes, physical activity, diet and barriers to healthy lifestyle changes among other ethnic minority populations in the UK; we recommend further research in this area.

Symptom burden in patients with chronic kidney disease not requiring renal replacement therapy

Abstract Background Although evidence shows that patients with end stage renal disease (ESRD) experience a high symptom burden which impacts on quality of life (QoL), less is known about patients with earlier stages of chronic kidney disease (CKD). This study aimed to explore symptom burden and potential contributing factors in patients with CKD Stage 1-5 not requiring renal replacement therapy (RRT). Methods Patients with CKD Stage 1-5 and not on RRT were asked to report their symptoms using the Leicester Uraemic Symptom Score (LUSS), a questionnaire which assesses the frequency and intrusiveness of 11 symptoms commonly reported by kidney patients. Results Symptoms were assessed in 283 CKD Stage 1-5 patients: 54% male, mean age 60.5 standard error± 1.0, mean eGFR 38ml/min/1.73m2. Some 96% (95% confidence interval 93.2–98.0) of participants reported experiencing at least one symptom, the median reported being six. Excessive tiredness (81%;76.0–85.6), sleep disturbance (70%;64.3–75.3) and pain in bones/joints (69%;63.4–74.6) were reported most commonly. Overall, few significant associations were found between biochemical markers of disease severity and symptom burden. Men tended to report fewer symptoms than women and South Asian patients often described experiencing symptoms with a greater severity. Older patients found musculoskeletal symptoms more intrusive whereas younger patients found reduced concentration more intrusive. Conclusions Our findings suggest that patients with CKD stages 1–5 experience a multitude of symptoms that could potentially impact QoL. Using multidimensional tools like the LUSS, more exploration and focus could provide a greater opportunity for patient focussed symptom control from the earliest stages of CKD.

The Epidemiology of Autism Spectrum Disorders in Adulthood

The work described in this chapter shows that it is possible to study autism among the adult population using similar methods to those used to study other mental disorders. It is vital that others undertake similar work elsewhere. There is no previous literature with which to compare our findings. For many the most surprising and concerning finding is that there are so many adults with autism in the community without any recognition or diagnosis, even in a country like England with health care that is free when needed for everyone.