Rory Sheehan

Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study.

Objectives To describe the incidence of recorded mental illness and challenging behaviour in people with intellectual disability in UK primary care and to explore the prescription of psychotropic drugs in this group. Design Cohort study. Setting 571 general practices contributing data to The Health Improvement Network clinical database. Participants 33 016 adults (58% male) with intellectual disability who contributed 211 793 person years’ data. Main outcome measures Existing and new records of mental illness, challenging behaviour, and psychotropic drug prescription. Results 21% (7065) of the cohort had a record of mental illness at study entry, 25% (8300) had a record of challenging behaviour, and 49% (16 242) had a record of prescription of psychotropic drugs. During follow-up, the rate of new cases of mental illness in people without a history at cohort entry was 262 (95% confidence interval 254 to 271) per 10 000 person years and the rate of challenging behaviour was 239 (231 to 247) per 10 000 person years. The rate of new psychotropic drug prescription in those without a previous history of psychotropic drug treatment was 518 (503 to 533) per 10 000 person years. Rates of new recording of severe mental illness declined by 5% (95% confidence interval 3% to 7%) per year (P<0.001), and new prescriptions of antipsychotics declined by 4% (3% to 5%) per year P<0.001) between 1999 and 2013. New prescriptions of mood stabilisers also decreased significantly. The rate of new antipsychotic prescribing was significantly higher in people with challenging behaviour (incidence rate ratio 2.08, 95% confidence interval 1.90 to 2.27; P<0.001), autism (1.79, 1.56 to 2.04; P<0.001), and dementia (1.42, 1.12 to 1.81; P<0.003) and in those of older age, after control for other sociodemographic factors and comorbidity. Conclusions The proportion of people with intellectual disability who have been treated with psychotropic drugs far exceeds the proportion with recorded mental illness. Antipsychotics are often prescribed to people without recorded severe mental illness but who have a record of challenging behaviour. The findings suggest that changes are needed in the prescribing of psychotropics for people with intellectual disability. More evidence is needed of the efficacy and safety of psychotropic drugs in this group, particularly when they are used for challenging behaviour.

Dementia in intellectual disability.

Purpose of review Dementia is emerging as a significant condition in the population with intellectual disability. This review is aimed at clinicians working in the field. We revisit what is known on the subject and expand on this with results from recent research. The emphasis of this review is on the clinical research rather than laboratory or molecular research. Recent findings Research has encompassed all aspects of dementia in intellectual disability, from epidemiology, assessment and diagnosis, through to management. There remains a lack of evidence concerning both pharmacological and nonpharmacological treatment of dementia in people with intellectual disability. Recent research has tended to focus on dementia in Down syndrome. Summary More research is necessary in order to translate improvements in the understanding of the neuropathology of intellectual disability and dementia into effective treatments. There is also a need to investigate the optimum environment in which to provide holistic care for individuals affected.

Reduction or discontinuation of antipsychotics for challenging behaviour in adults with intellectual disability: a systematic review

The use of antipsychotics to manage challenging behaviour in adults with intellectual disability is widespread but controversial, and evidence is scarce. There is a perception that antipsychotics used in this context can be reduced or discontinued, and this has been a major focus of recent national policy. However, such an intervention risks harm as well as having potential benefits. We reviewed the available evidence and found that antipsychotics can be reduced or discontinued in a substantial proportion of adults who use them for challenging behaviour, although not always without adverse effects. There is a group which displays behavioural deterioration on antipsychotic reduction that prevents discontinuation; predictors of poor response could not be reliably identified. In view of the relatively scarce data and methodological limitations of the available studies, we cannot draw firm conclusions to inform a population level approach to this issue. Antipsychotic medication used for behaviour should be reviewed regularly and an individualised approach taken to treatment.

A comparison of different models to meet the mental health needs of adults with intellectual disabilities

Purpose – There is ongoing discussion around how to structure psychiatric services to meet the needs of people with intellectual disability and co‐morbid mental illness and several different models have been suggested. With research evidence lacking, there is a lack of consensus as to the best model of service provision. This paper aims to review the current knowledge in this area and discuss the salient issues.Design/methodology/approach – This is a review article summarising the current debate. Evidence from original research is presented and combined with opinion from clinical experience.Findings – The authors find a lack of robust research evidence to support any particular model of service provision. However, it seems to be increasingly accepted that purely generic models of care for people with intellectual disabilities and co‐morbid mental illness are not appropriate. Integration of the expertise from specialist services within mainstream services is presented as potentially the most advantageous a...

Movement side effects of antipsychotic drugs in adults with and without intellectual disability: UK population-based cohort study

Objectives To measure the incidence of movement side effects of antipsychotic drugs in adults with intellectual disability and compare rates with adults without intellectual disability. Design Cohort study using data from The Health Improvement Network. Setting UK primary care. Participants Adults with intellectual disability prescribed antipsychotic drugs matched to a control group of adults without intellectual disability prescribed antipsychotic drugs. Outcome measures New records of movement side effect including acute dystonias, akathisia, parkinsonism, tardive dyskinaesia and neuroleptic malignant syndrome. Results 9013 adults with intellectual disability and a control cohort of 34 242 adults without intellectual disability together contributed 148 709 person-years data. The overall incidence of recorded movement side effects was 275 per 10 000 person-years (95% CI 256 to 296) in the intellectual disability group and 248 per 10 000 person-years (95% CI 237 to 260) in the control group. The incidence of any recorded movement side effect was significantly greater in people with intellectual disability compared with those without (incidence rate ratio 1.30, 95% CI 1.18 to 1.42, p<0.001, after adjustment for potential confounders), with parkinsonism and akathisia showing the greatest difference between the groups. Neuroleptic malignant syndrome, although occurring infrequently, was three times more common in people with intellectual disability-prescribed antipsychotic drugs (incidence rate ratio 3.03, 95% CI 1.26 to 7.30, p=0.013). Differences in rates of movement side effects between the groups were not due to differences in the proportions prescribed first and second-generation antipsychotic drugs. Conclusions This study provides evidence to substantiate the long-held assumption that people with intellectual disability are more susceptible to movement side effects of antipsychotic drugs. Assessment for movement side effects should be integral to antipsychotic drug monitoring in people with intellectual disability. Regular medication review is essential to ensure optimal prescribing in this group.

An audit of the quality of inpatient care for adults with learning disability in the UK

Objectives To audit patient hospital records to evaluate the performance of acute general and mental health services in delivering inpatient care to people with learning disability and explore the influence of organisational factors on the quality of care they deliver. Setting Nine acute general hospital Trusts and six mental health services. Participants Adults with learning disability who received inpatient hospital care between May 2013 and April 2014. Primary and secondary outcome measures Data on seven key indicators of high-quality care were collected from 176 patients. These covered physical health/monitoring, communication and meeting needs, capacity and decision-making, discharge planning and carer involvement. The impact of services having an electronic system for flagging patients with learning disability and employing a learning disability liaison nurse was assessed. Results Indicators of physical healthcare (body mass index, swallowing assessment, epilepsy risk assessment) were poorly recorded in acute general and mental health inpatient settings. Overall, only 34 (19.3%) patients received any assessment of swallowing and 12 of the 57 with epilepsy (21.1%) had an epilepsy risk assessment. For most quality indicators, there was a non-statistically significant trend for improved performance in services with a learning disability liaison nurse. The presence of an electronic flagging system showed less evidence of benefit. Conclusions Inpatient care for people with learning disability needs to be improved. The work gives tentative support to the role of a learning disability liaison nurse in acute general and mental health services, but further work is needed to confirm these benefits and to trial other interventions that might improve the quality and safety of care for this high-need group.

Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: clinical cohort study

BACKGROUND There is little evidence to guide pharmacological treatment in adults with Down syndrome and Alzheimers disease. Aims To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimers disease. METHOD This was a naturalistic longitudinal follow-up of a clinical cohort of 310 people with Down syndrome diagnosed with Alzheimers disease collected from specialist community services in England. RESULTS Median survival time (5.59 years, 95% CI 4.67-6.67) for those on medication (n = 145, mainly cholinesterase inhibitors) was significantly greater than for those not prescribed medication (n = 165) (3.45 years, 95% CI 2.91-4.13, log-rank test P<0.001). Sequential assessments demonstrated an early effect in maintaining cognitive function. CONCLUSIONS Cholinesterase inhibitors appear to offer benefit for people with Down syndrome and Alzheimers disease that is comparable with sporadic Alzheimers disease; a trial to test the effect of earlier treatment (prodromal Alzheimers disease) in Down syndrome may be indicated. Declaration of interest A.S. has undertaken consulting for Ono Pharmaceuticals, outside the submitted work. Z.W. has received a consultancy fee and grant from GE Healthcare, outside the submitted work.

Psychotropic prescribing in people with intellectual disability and challenging behaviour

Aligning evidence, practice, and policy

Digital mental health and intellectual disabilities: state of the evidence and future directions

The use of digital technologies in the management of mental illness, and more generally in the promotion of well-being and mental health, has received much recent attention and is a focus of current health policy. We conducted a narrative review to explore the opportunities and risks of digital technologies in mental healthcare specifically for people with intellectual disability, a sometimes marginalised and socially excluded group. The scope of digital mental health is vast and the promise of cheaper and more effective interventions delivered digitally is attractive. People with intellectual disability experience high rates of mental illness and could benefit from the development of novel therapies, yet seem to have been relatively neglected in the discourse around digital mental health and are often excluded from the development and implementation of new interventions. People with intellectual disability encounter several barriers to fully embracing digital technology, which may be overcome with appropriate support and adaptations. A small, but growing, literature attests to the value of incorporating digital technologies into the lives of people with intellectual disability, not only for promoting health but also for enhancing educational, vocational and leisure opportunities. Clearly further evidence is needed to establish the safety and clinical efficacy of digital mental health interventions for people with and without intellectual disability. A digital inclusion strategy that explicitly addresses the needs of people with intellectual disability would ensure that all can share the benefits of the digital world.

Self-stigma in People with Intellectual Disabilities

This chapter examines to what extent individuals with intellectual disabilities accept and internalize the label of ‘intellectual disabilities’, and its negative attributes, based on the model of self-stigma that is used by researchers within the mental illness field. We consider the factors that may influence whether people internalize the stigma associated with their intellectual disabilities, and the impact of stigma on self-esteem and emotional well-being. We identify that there is limited research on self-stigma and current evidence suggests that people with intellectual disabilities often reject the stigma associated with intellectual disabilities and therefore do not internalize stigma. Possible reasons for this include a lack of cognitive development and overprotection from significant others. We consider the limitations and future directions for research.