The provision of aids and adaptations, risk assessments, and incident reporting and recording procedures in relation to injury prevention for adults with intellectual disabilities: cohort study.

BACKGROUND: Adults with intellectual disabilities (IDs) experience a higher incidence of injury, compared with the general population. The aim of this study was to investigate the provision of aids and adaptations, residential service providers' individual risk assessments and training in these, and injury incident recording and reporting procedures, in relation to injury prevention. METHOD: Interviews were conducted with a community-based cohort of adults with IDs (n = 511) who live in Greater Glasgow, Scotland, UK and their key carer (n = 446). They were asked about their aids and adaptations at home, and paid carers (n = 228) were asked about individual risk assessments, their training, and incident recording and reporting procedures. RESULTS: Four hundred and twelve (80.6%) of the adults with IDs had at least one aid or adaptation at home to help prevent injury. However, a proportion who might benefit, were not in receipt of them, and surprisingly few had temperature controlled hot water or a bath thermometer in place to help prevent burns/scalds, or kitchen safety equipment to prevent burns/scalds from electric kettles or irons. Fifty-four (23.7%) of the paid carers were not aware of the adult they supported having had any risk assessments, and only 142 (57.9%) had received any training on risk assessments. Considerable variation in incident recording and reporting procedures was evident. CONCLUSION: More work is needed to better understand, and more fully incorporate, best practice injury prevention measures into routine support planning for adults with IDs within a positive risk-taking and risk reduction framework.

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.

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.

Adults with intellectual disabilities: prevalence, incidence and remission of self-injurious behaviour, and related factors.

BACKGROUND: Self-injurious behaviour (SIB) is a serious condition, with implications for the person, their family and financial costs to the state providing care. The previously reported prevalence of SIB has ranged from 1.7% to 41%, or 1.7%-23.7% in community studies. There has been little study of remission rate, and incidence has not previously been reported. SIB has been reported to be individually associated with lower ability, autism and communication impairments, but given the inter-relationships between these three factors, it is not known whether they are independently associated with SIB. This study investigates the point prevalence, incidence and remission rates of SIB among the adult population with intellectual disabilities (ID), and explores which factors are independently associated with SIB. METHOD: A prospective cohort study design was used in a general community setting. The participants were all adults (16 years and over) with ID in a defined geographical area. Individual assessments were conducted with all participants. RESULTS: The point prevalence of SIB (as defined by DC-LD) was 4.9%, the two-year incidence was 0.6%, and two-year remission rate was 38.2%. Independently related to SIB were: lower ability level, not living with a family carer, having attention deficit hyperactivity disorder, visual impairment, and not having Down syndrome. Other factors, including communication impairment, autism, and level of deprivation of the area resided within, were not related. CONCLUSIONS: SIB is not as enduring and persistent as previously thought; a significant proportion gains remission in this time period. This should provide hope for families, paid carers and professionals, and reduce therapeutic nihilism. Our study is a first tentative step towards identifying risk-markers for SIB, and developing aetiological hypotheses for subsequent testing. The extent to which SIB may be a relapsing-remitting (episodic) condition requires further investigation, so does further hypothesis-based investigation of factors that might be predictive of incidence of, and remission from, SIB.

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.