L. Allan

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.

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.

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.

Prevalence of, and factors associated with, problem behaviors in adults with intellectual disabilities.

This study aimed to determine the prevalence of problem behaviors in adults with intellectual disabilities and to investigate which factors are independently associated with problem behaviors. A population-based cohort (n = 1023) had comprehensive individual assessments. Data were examined using multivariate logistic regression. The prevalence of problem behaviors was 22.5% (psychiatrists’ opinion) or 18.7% (DC-LD criteria). Factors independently associated with problem behaviors were lower ability level, female gender, living in a congregate care setting or with paid carer support (rather than living with a family carer), having urinary incontinence; visual impairment, not having Down syndrome, and not having severe physical disabilities. Further studies focusing on the etiology, course, and treatment of problem behaviors are required.

Cost Estimation of a Health-Check Intervention for Adults with Intellectual Disabilities in the UK.

BACKGROUND High rates of health needs among adults with intellectual disabilities flag the need for information about the economic consequences of strategies to identify and address unmet needs. Health-check interventions are one such strategy, and have been demonstrated to effect health gains over the following 12-month period. However, little is known about their effects on service use and costs, and hence how affordable such interventions are. METHODS We examined service use patterns and costs over a 12-month period for 50 adult participants with intellectual disabilities who received a health-check intervention and 50 individually matched control participants who received standard care only. RESULTS The health-check intervention was cheap, and it did not have associated higher costs in terms of service usage. Indeed, mean cost of care for the adults who received standard care only was greater than for the adults who received the health-check intervention. The higher costs were due to differences in unpaid carer support costs. CONCLUSION This is the first study to report the associated service use, and costs of a health-check intervention to improve the health of adults with intellectual disabilities and reduce health inequalities. Results suggest this intervention is cheap and affordable compared with standard care, supporting clinical outcome evidence for its introduction into health care policy and implementation. However, further research is needed to confirm this finding with a larger sample.

Practice nurse health checks for adults with intellectual disabilities: a cluster-design, randomised controlled trial

BACKGROUND Adults with intellectual disabilities have substantial health inequalities and poor access to health care. We assessed whether practice nurse-delivered health checks could improve the health of adults with intellectual disabilities compared with standard care. METHODS In this cluster-design, single-blind, randomised controlled trial, we included general practices in Scotland, UK. From June to December, 2011, we randomly assigned (1:1) these general practices to either health checks plus standard care (health-checks group), or standard care only (control group), and we recruited the patients from these practices. Randomisation was done with stratification by number of GPs per practice and number of registered patients with intellectual disabilities (<20 or ≥20). Two research assistants were masked to allocation, and undertook the review of 9 month medical records and interviews. Participants and carers were not masked. The intervention was one health check designed especially for people with intellectual disabilities delivered by a practice nurse. The objective was improvement in health and health care 9 months after randomisation, and the primary outcome was the incidence of newly detected health needs being met by this timepoint. Whether needs were met was established by the investigators being masked to group allocation. The analysis was by intention to treat. This trial is registered with Current Controlled Trials, number ISRCTN43324841. FINDINGS Between June 26 and Dec 20, 2011, we recruited 38 practices. 85 participants (from 16 practices) were randomly assigned to intervention and 67 (from 17 practices) to standard care; five of the identified practices did not supply any participants. 83 intervention and 66 standard care participants completed the trial. More newly detected health needs were met in the intervention group than in the control standard care group (median 1 [range 0-8], 76·4% met [SD 36·5] vs 2 [0-11], 72·6% met [35·4]; odds ratio [OR] 1·73 [95% CI 0·93-3·22], p=0·085), although this difference was not significant. Significantly more health monitoring needs were met in the intervention group than standard care (median 2 [0-20], 69·9% [SD 34·2] vs 2 [0-22], 56·8% [29·4], OR 2·38 [95% CI 1·31-4·32, p=0·0053]). The probability that health checks are cost effective was between 0·6 and 0·8, irrespective of the cost-effectiveness threshold level. Costs per patient were -£71·48 for health checks and -£20·56 for standard care. The difference (-£50·92) was not significant [95% CI -434 to 362]. No adverse events were attributable to the intervention. INTERPRETATION Health checks given by practice nurses to adults with intellectual disabilities produced health-care improvements that were more conducive to longer-term health than standard care given to this population. The intervention dominated standard care, being both cheaper and more effective. Health-check programmes might therefore be indicated for adults with intellectual disabilities. FUNDING Scottish Government Change Fund, NHS Greater Glasgow and Clyde Research and Development.

A cohort study of the prevalence of sleep problems in adults with intellectual disabilities

Previous studies of the prevalence of sleep problems in adults with intellectual disabilities (ID) are affected by small, potentially biased samples and other limitations. This study aims to determine the prevalence and associations of sleep problems in the adult population with ID. The 4‐week period prevalence of sleep problems was determined in a cross‐sectional study of all adults with ID in a defined geographical area. Sleep problems were identified using the Psychiatric Assessment Scale for Adults with Developmental Disabilities (PAS‐ADD) checklist and categorized as initial insomnia, early morning wakening and broken sleep. A fourth, composite, variable of significant sleep problem was also derived. Of the 1023 adults with ID who participated, 9.2% had experienced a significant sleep problem, during the 1‐month period. Individuals with a significant sleep problem are more likely to have mental ill‐health [odds ratio (OR) = 5.53, 95% confidence interval (CI) 3.52–8.69], problem behaviours (OR = 2.06, 95% CI: 1.25–3.41) and respiratory disease (OR = 2.03, 95% CI: 1.27–3.26). There is a positive association between visual impairment and initial insomnia (OR = 1.91, 95% CI: 1.21–3.04). Although a diagnosis of epilepsy is not associated with sleep problems, the finding that individuals taking antiepileptic medication are more likely to experience broken sleep (OR = 1.73, 95% CI: 1.13–2.66) suggests that medication side effects may impact on sleep of individuals with ID. The results suggest that there is a need to further examine the relationship between sleep problems and co‐morbid health problems, which would inform the development of interventions, and trials of their efficacy.

Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study

Objectives To investigate the prevalence of multimorbidity in adults with intellectual disabilities with and without Down syndrome. Design Large, population-based cross-sectional study. Setting The geographical area of one Health Board, Scotland. Participants All adults (aged 16+ years) known to general practitioners to have intellectual disabilities and adults receiving services provided or paid by intellectual disabilities health or social work services. 1023/1562 potential participants took part (65.5%); 562 (54.9%) men and 461 (45.1%) women, aged 43.9 years (16–83 years). 186 had Down syndrome and 837 did not. Main outcome measures The prevalence of International Statistical Classification of Diseases, 10th revision, physical health conditions and multimorbidity detected at a comprehensive health assessment. Results The mean number of physical health conditions/participant was 11.04, and 98.7% had multimorbidity. The most prevalent conditions are painful and/or disabling and, in some cases, life threatening. The five most prevalent were visual impairment, obesity, epilepsy, constipation and ataxic/gait disorders. The pattern of multimorbidity differs from that seen in the general population and is spread across the entire adult life course. The extent of multimorbidity in the adults with Down syndrome was similar to that of the adults without Down syndrome, while the prevalence of individual conditions differed. Conclusions This robustly designed study with a large population found an extremely high prevalence of multimorbidity in adults with intellectual disabilities across the entire adult life course. This increases complexity of medical management that secondary healthcare services and medical education are not yet geared towards, as these tend to focus on single conditions. This is in addition to complexity due to limitations in communication and understanding. As the physical conditions within their multimorbidity also differ from that seen in the older general population, urgent attention is needed to develop the care pathways and guidelines that are required to inform and so improve their healthcare.

The relationship between physical ill-health and mental ill-health in adults with intellectual disabilities

BACKGROUND People with intellectual disabilities face a much greater burden and earlier onset of physical and mental ill-health than the general adult population. Physical-mental comorbidity has been shown to result in poorer outcomes in the general population, but little is known about this relationship in adults with intellectual disabilities. AIMS To identify whether physical ill-health is associated with mental ill-health in adults with intellectual disabilities and whether the extent of physical multi-morbidity can predict the likelihood of mental ill-health. To identify any associations between types of physical ill-health and mental ill-health. METHOD A total of 1023 adults with intellectual disabilities underwent comprehensive health assessments. Binary logistic regressions were undertaken to establish any association between the independent variables: total number of physical health conditions, physical conditions by International Classification of Disease-10 chapter and specific physical health conditions; and the dependent variables: problem behaviours, mental disorders of any type. All regressions were adjusted for age, gender, level of intellectual disabilities, living arrangements, neighbourhood deprivation and Down syndrome. RESULTS The extent of physical multi-morbidity was not associated with mental ill-health in adults with intellectual disabilities as only 0.8% of the sample had no physical conditions. Endocrine disease increased the risk of problem behaviours [odds ratio (OR): 1.22, 95% confidence interval (CI): 1.02-1.47], respiratory disease reduced the risk of problem behaviours (OR: 0.73, 95% CI: 0.54-0.99) and mental ill-health of any type (OR: 0.73, 95% CI: 0.58-0.92), and musculoskeletal disease reduced the risk of mental ill-health of any type (OR: 0.84, 95% CI: 0.73-0.98). Ischaemic heart disease increased the risk of problem behaviours approximately threefold (OR: 3.29, 95% CI: 1.02-10.60). CONCLUSIONS The extent of physical multi-morbidity in the population with intellectual disabilities is overwhelming, such that associations are not found with mental ill-health. Mental health interventions and preventative measures are essential for the entire population with intellectual disabilities and should not be focussed on subgroups based on overall health burden.