Sally-Ann Cooper

People with intellectual disabilities

Their health needs differ and need to be recognised and met People with intellectual disabilities comprise about 2% of the UK population. Demographics are, however, changing and the population of people with intellectual disabilities increased by 53% over the 35 year period 1960-95, which equals 1.2% per year.1 A further 11% increase is projected for the 10 year period 1998-2008. These changes are the result of improved socioeconomic conditions, intensive neonatal care, and increasing survival. The health needs of people with intellectual disabilities have an impact on primary healthcare services and all secondary healthcare specialties. People with intellectual disabilities experience health inequalities compared with the general population. Although their life expectancy is increasing, it remains much lower than for the rest of the population.2–5 The standardised mortality ratio has been found to be 8.4 for people with severe intellectual disabilities in United States and 4.9 for people with intellectual disabilities of all levels in Australia.4 5 Additionally, people with intellectual disabilities have higher levels of health …

The Leicester 500 Project. Social support and the development of postnatal depressive symptoms, a prospective cohort survey.

BACKGROUND A prospective epidemiology study evaluated the role of specific social and psychological variables in the prediction of depressive symptomatology and disorders following childbirth in a community sample. Measures of social support used previously in clinically depressed populations facilitated further comparison. METHODS Nulliparous pregnant women (N = 507) were interviewed during pregnancy with the Interview Measure of Social Relationships (IMSR) and a contextual assessment of pregnancy-related support and adversity and 427 were followed up at 3 months postpartum with the 30-item GHQ, including six depression items. To establish the clinical representativeness of the GHQ, high GHQ scorers and a random subsample of low scorers were interviewed using the SCAN. Regression models were developed using the GHQ Depression scale (GHQ-D), the IMSR and other risk factor data. RESULTS GHQ-D after childbirth was predicted by lack of perceived support from members of the womans primary group and lack of support in relation to the event becoming pregnant; this held even after controlling for antenatal depression, neuroticism, family and personal psychiatric history and adversity. Informant-rated deficits in provision of social support also predicted later depression. The size of the primary social network group previously found to be related to depression in women, did not predict depressive symptom development. CONCLUSION Predictors of depressive symptom development differ from predictors of recovery from clinical depression in women. Interventions should be designed to reduce specific deficits in social support observed in particular study populations.

Randomized controlled trial of brief cognitive behaviour therapy versus treatment as usual in recurrent deliberate self-harm: the POPMACT study

BACKGROUND We carried out a large randomized trial of a brief form of cognitive therapy, manual-assisted cognitive behaviour therapy (MACT) versus treatment as usual (TAU) for deliberate self-harm. METHOD Patients presenting with recurrent deliberate self-harm in five centres were randomized to either MACT or (TAU) and followed up over 1 year. MACT patients received a booklet based on cognitive behaviour therapy (CBT) principles and were offered up to five plus two booster sessions of CBT from a therapist in the first 3 months of the study. Ratings of parasuicide risk, anxiety, depression, social functioning and global function, positive and negative thinking, and quality of life were measured at baseline and after 6 and 12 months. RESULTS Four hundred and eighty patients were randomized. Sixty per cent of the MACT group had both the booklet and CBT sessions. There were seven suicides, five in the TAU group. The main outcome measure, the proportion of those repeating deliberate self-harm in the 12 months of the study, showed no significant difference between those treated with MACT (39%) and treatment as usual (46%) (OR 0.78, 95% CI 0.53 to 1.14, P=0.20). CONCLUSION Brief cognitive behaviour therapy is of limited efficacy in reducing self-harm repetition, but the findings taken in conjunctin with the economic evaluation (Byford et al. 2003) indicate superiority of MACT over TAU in terms of cost and effectiveness combined.

Adults with intellectual disabilities : prevalence, incidence and remission of aggressive behaviour and related factors

INTRODUCTION Aggressive behaviours can be disabling for adults with intellectual disabilities (ID), with negative consequences for the adult, their family and paid carers. It is surprising how little research has been conducted into the epidemiology of these needs, given the impact they can have. This study investigates point prevalence, 2-year incidence and 2-year remission rates for aggressive behaviour (physically aggressive, destructive and verbally aggressive), and it investigates which factors are independently associated with aggressive behaviour. METHODS All adults with ID - within a geographically defined area of Scotland, UK - were recruited to a longitudinal cohort. At baseline, assessments were undertaken of demography, lifestyle, supports, development, problem behaviours, disabilities and physical and mental health. These were repeated for a 2-year period. RESULTS At baseline, the participation rate was 1023 (65.5%). After 2 years, the cohort retention was 651 adults. The point prevalence of Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation (DC-LD) aggressive behaviour was 9.8% (95% confidence interval = 8.0-11.8%), 2-year incidence was 1.8%, and 2-year remission rate from all types of aggressive behaviour meeting DC-LD criteria was 27.7%. The factors independently associated with aggressive behaviours were lower ability, female gender, not living with a family carer, not having Down syndrome, having attention-deficit hyperactivity disorder and having urinary incontinence. Incidence of aggressive behaviour meeting DC-LD criteria in adult life is similar to that for each of psychotic, anxiety and organic disorders. CONCLUSIONS Aggressive behaviour is common among adults with ID, but contrary to previous suggestions, more than a quarter remit within the short to medium term. This is important knowledge for professionals as well as the person and her/his family and paid carers. There is much yet to learn about the mechanisms underpinning aetiology and maintenance of aggressive behaviour in this population, and exploratory epidemiological investigations such as this have a role to play in progressing research towards further hypothesis testing and trials to influence clinical practice, service development and policy.

Clinical Study of the Effects of Age on the Physical Health of Adults with Mental Retardation.

Physical disorders and pharmacotherapy for all 134 people with mental retardation ages 65 years and over living in Leicestershire, United Kingdom, were examined. Results were compared with a randomly selected group of 73 younger adults with mental retardation. Group comparisons revealed higher rates of urinary incontinence, immobility, hearing impairments, arthritis, hypertension, and cerebrovascular disease among the older group. The younger group had higher rates of dermatological disorders; congenital heart disease; ear, nose, and throat (ENT) disorders; and neurological disorders (excluding Parkinson disease). The older group took more drugs for physical illness. The effect of ageing on physical morbidity outweighs the effect of people with more severe mental retardation dying younger: Older people with mental retardation have significant physical health needs.

The Prevalence and Incidence of Mental Ill-Health in Adults with Down Syndrome.

BACKGROUND While there is considerable literature on adults with Down syndrome who have dementia, there is little published on the epidemiology of other types of mental ill-health in this population. METHOD Longitudinal cohort study of adults with Down syndrome who received detailed psychiatric assessment (n = 186 at the first time point; n = 134 at the second time point, 2 years later). RESULTS The prevalence of Down syndrome for the 16 years and over population was 5.9 per 10 000 general population. Point prevalence of mental ill-health of any type, excluding specific phobias, was 23.7% by clinical, 19.9% by Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities/Mental Retardation (DC-LD), 11.3% by ICD-10 Classification of Mental and Behavioural Disorders: Diagnostic Criteria for Research (DCR-ICD-10) and 10.8% by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition Revised (DSM-IV-TR) criteria. Two-year incidence of mental ill-health of any type was 14.9% by clinical and DC-LD, 9.0% by DCR-ICD-10 and 3.7% by DSM-IV-TR criteria. The highest incidence was for depressive episode (5.2%) and dementia/delirium (5.2%). Compared with persons with intellectual disabilities (ID) of all causes, the standardized rate for prevalence of mental ill-health was 0.6 (0.4-0.8), or 0.4 (0.3-0.6) if organic disorders are excluded, and the standardized incidence ratio for mental ill-health was 0.9 (0.6-1.4), or 0.7 (0.4-1.2) if organic disorders are excluded. Urinary incontinence was independently associated with mental ill-health, whereas other personal factors, lifestyle and supports, and other types of health needs and disabilities were not. CONCLUSIONS Mental ill-health is less prevalent in adults with Down syndrome than for other adults with ID. The pattern of associated factors differs from that is found for other adults with ID, with few associations found. This suggests that the protection against mental ill-health is biologically determined in this population, or that there are other factors protective for mental ill-health yet to be identified for the population with Down syndrome.

Psychiatric disorders amongst adults with learning disabilities - prevalence and relationship to ability level

OBJECTIVES To determine the prevalence of psychiatric disorders in adults with learning disabilities, and the relationship with severity of learning disabilities. METHOD The study is population-based. Detailed psychiatric assessments on 207 adults with learning disabilities living in Leicestershire, UK. were conducted by a learning disabilities psychiatrist, using the Present Psychiatric State - Learning Disabilities; and Disability Assessment Schedule. Diagnostic criteria are clearly defined. Developmental assessments were undertaken using the Vineland Scale (survey form). RESULTS Psychiatric disorders were found in 49.2%, and rates for most individual disorders were higher than those found in the general population. Comparison with the two previous population-based studies shows the ascertained rates were broadly similar to those reported by Corbett but higher than those reported by Lund. Adults with more severe learning disabilities had higher rates of additional psychiatric disorders. CONCLUSIONS The results may be explained by a combination of the genetic, physical, psychological and social factors associated with learning disabilities also being aetiological to psychiatric disorders. The high prevalence rates of psychiatric disorders demonstrate the importance of health service provision for adults with learning disabilities.

Injuries, falls and accidents among adults with intellectual disabilities. Prospective cohort study.

BACKGROUND Injuries are among the leading causes of death and disability in the world and a major public health concern. Falls are a common cause. Young persons with intellectual disabilities (ID) have a higher rate and different pattern of injuries than the general population, but little is known regarding adults. METHODS The aim of this study was to determine the incidence and types of injuries experienced by a community-based cohort of adults with ID (n = 511) in a 12-month period. Face-to-face interviews were conducted with participants 2 years after they had first been recruited into a longitudinal study. RESULTS Incidence of at least one injury in a 12-month period was 20.5% (105), of which 12.1% (62) was because of falls. Incident injury was predicted by having epilepsy and not having autism. Incident fall injury was predicted by urinary incontinence, while Down syndrome reduced risk. CONCLUSIONS Adults with ID do experience a higher rate of injuries and falls when compared with the general population. The results of this study highlight this, and hence the need to work towards the development of interventions for injury and falls prevention in this population.

An epidemiological investigation of affective disorders with a population-based cohort of 1023 adults with intellectual disabilities

BACKGROUND Intellectual disabilities (ID) are common and lifelong. People with ID have health inequalities compared with the general population, but little is known about the epidemiology of affective disorders in this population. This study was undertaken to determine the point prevalence of affective disorders, and to investigate factors associated with depression. METHOD This population-based study (n=1023) included comprehensive individual assessments with each person. A two-stage process was used for diagnosis of affective disorders. Factors independently associated with depression were investigated through logistic regression analysis. RESULTS The point prevalence was higher than that reported previously for the general population; DC-LD yielded 3.8% for depression and 0.6% for mania. Additionally, 1.0% had bipolar disorder currently in remission, and 0.1% first episode of mania currently in remission. Similar to general population findings, depression was associated with female gender, smoking, number of preceding family physician appointments, and preceding life events. Important differences were the association of not having a hearing impairment, and the trends for not living in deprived areas, and being married. Unlike general population findings, not having daytime occupation and obesity were not independently associated; nor was previous long-stay hospital residence, severity of ID, or sensory impairments. CONCLUSIONS This study has found a high point prevalence of affective disorders in adults with ID. The factors associated with depression have differences to general population findings. An understanding of this is important in order to develop appropriate interventions, public strategy and policy, to reduce existing health inequalities.

The prevalence and incidence of mental ill-health in adults with autism and intellectual disabilities

The prevalence, and incidence, of mental ill-health in adults with intellectual disabilities and autism were compared with the whole population with intellectual disabilities, and with controls, matched individually for age, gender, ability-level, and Down syndrome. Although the adults with autism had a higher point prevalence of problem behaviours compared with the whole adult population with intellectual disabilities, compared with individually matched controls there was no difference in prevalence, or incidence of either problem behaviours or other mental ill-health. Adults with autism who had problem behaviours were less likely to recover over a two-year period than were their matched controls. Apparent differences in rates of mental ill-health are accounted for by factors other than autism, including Down syndrome and ability level.