ADHD AND CHALLENGING BEHAVIOUR IN PEOPLE WITH INTELLECTUAL DISABILITY: SHOULD WE SCREEN FOR ADHD?

People with Intellectual Disability (ID) have cognitive impairments that affect their level of functioning the causes of which are multiple and often unknown. Behavioural difficulties are common among people with ID. Attention Deficit Hyperactivity Disorder (ADHD) is recognised more among people with Intellectual Disability and could be a cause of problem behaviours. Screening and assessing for ADHD in people with ID is difficult because of the paucity of robust assessment tools and diagnostic criteria

ADHD AND CHALLENGING BEHAVIOUR IN PEOPLE WITH INTELLECTUAL DISABILITY: SHOULD WE SCREEN FOR ADHD?

People with Intellectual Disability (ID) have cognitive impairments that affect their level of functioning the causes of which are multiple and often unknown. Behavioural difficulties are common among people with ID. Attention Deficit Hyperactivity Disorder (ADHD) is recognised more among people with Intellectual Disability and could be a cause of problem behaviours. Screening and assessing for ADHD in people with ID is difficult because of the paucity of robust assessment tools and diagnostic criteria

Adults with intellectual disability and Attention Deficit Hyperactivity Disorder:Clinical characteristics and medication profiles

Accessible summary Attention deficit hyperactivity disorder (ADHD) is often missed/underdiagnosed in people with intellectual disability compared to people without intellectual disability. The presence of intellectual disability, autism and challenging behaviour should raise the suspicion of ADHD as comorbid neurodevelopmental disorder. Treatment of ADHD in people with intellectual disability may reduce the need for antipsychotic medications. The diagnosis of ADHD is often missed or misdiagnosed in people with intellectual disability. Despite a significant growth in literature on the diagnosis and treatment of ADHD in people without intellectual disability, there have been few studies on ADHD in people with intellectual disability. In this paper, we describe a group of adults with intellectual disability and ADHD disorder open to a specialist community intellectual disability service. We examined the frequency and dose of antipsychotic use and considered whether ADHD disorder medication is associated with a reduced use of psychotropic medication. The study found a high incidence of autism in people with intellectual disability and ADHD. Men with intellectual disability were given the diagnosis of ADHD more often compared to women with intellectual disability. Only 64% of people with ADHD and intellectual disability taking ADHD medication were on antipsychotic medications compared to 93% of people with ADHD and intellectual disability without ADHD medications. This generates several hypotheses such as whether antipsychotic medications are prescribed to control ADHD symptoms, whether use of ADHD medications can reduce the use of antipsychotic medications and/or whether antipsychotics are used to treat underlying psychiatric comorbidities in people with ADHD. Randomised controlled trials are needed to answer the question whether use of ADHD medication reduces the use of antipsychotic medication in people with intellectual disability and ADHD. Further studies are also needed to explore reason for not using ADHD medication in certain patients with ADHD and intellectual disability and what treatment options are effective in treating psychiatric comorbidities in people with ADHD and intellectual disability

Quality improvement in the management of people with epilepsy and intellectual disability: the development of clinical guidance

Introduction: This clinical guidance looks at the specific concerns of delivery of medical treatment for people with epilepsy and intellectual disability (ID). People with ID have not been included in licensing drug trials of AEDs. However, this population has an over-representation of seizure comorbidity, treatment resistance, and polypharmacy while also being vulnerable to not having their views considered. Areas covered: This review summarizes the current most robust evidence available for the use of licensed AEDs in people with epilepsy and ID. The article provides practical evidence-based clinical information to help prescribers choose the most appropriate AED from the drugs discussed. The article highlights other important individualized factors to consider before initiating or changing antiepileptic medication. Expert opinion: A ‘traffic light’ coding system is applied to commonly used AEDs based on the level of evidence and expert clinical experience. Managing epilepsy in the ID population requires specialist care. Treatment plans need to be holistic and tailored to accommodate an individual’s comorbidities, concurrent medications, general health, social and environmental status. There is a need for large quality trial data to assess the most suitable AEDs on seizure control and quality of life in this population with complex needs

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England

BACKGROUND: Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs. METHOD: Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent). RESULTS: Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models. CONCLUSIONS: ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community

Sleep: the neglected life factor in adults with intellectual disabilities

Sleep is vital for our physical and mental health. Studies have shown that there is a high prevalence of sleep disorders and sleep difficulties amongst adults with intellectual disabilities. Despite this, sleep is often overlooked or its disorders are considered to be difficult to treat in adults with intellectual disabilities. There is a significant amount of research and guidance on management of sleep disorders in the general population. However, the evidence base for sleep disorders in adults with intellectual disabilities is limited. In this review paper, we look at the current evidence base for sleep disorders in adults with an intellectual disability, discuss collaborative working between intellectual disabilities psychiatrists and sleep medicine specialists to manage sleep disorders, and provide recommendations for future directions

Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol

Introduction: Approximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs. Methods and analysis: A cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams. Ethics and dissemination: The study was approved by the London–Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm’s-length bodies and policymakers via publications, seminars and digital platforms. Trial registration number: ClinicalTrials.gov Registry (NCT03586375)

Evaluating specialist intensive support teams for adults with intellectual disabilities who display behaviours that challenge: The IST-ID mixed methods study

Background Intensive Support Teams (ISTs) are recommended for individuals with intellectual disabilities who display behaviours that challenge. However, there is currently little evidence about the clinical and cost effectiveness of IST models operating in England. Aims To investigate the clinical and cost effectiveness of IST models. Methods We carried out a cohort study to evaluate the clinical and cost-effectiveness of two previously identified IST models (independent and enhanced) in England. Adult participants (n=226) from 21 ISTs (10 independent and 11 enhanced) were enrolled. The primary outcome was change in challenging behaviour between baseline and 9 months measured by the Aberrant Behaviour Checklist-Community 2. Results We found no statistically significant differences between models for the primary outcome (adjusted β: 4.27; 95% CI: -6.34 to 14.87; p=0.430) or any secondary outcomes. Quality Adjusted Life Years (0.0158; 95% CI: -0.0088 to 0.0508) and costs (£3409.95; 95% CI: -£9957.92 to £4039.89) of the two models were comparable. Conclusions The study provides evidence that both models were associated with clinical improvement for similar costs at follow-up. We recommend that the choice of service model should rest with local services. Further research should investigate the critical components of IST care to inform the development of fidelity criteria, and policy makers should consider whether roll out of such teams should be mandated. Study registration number ClinicalTrials.gov NCT03586375 ; IRAS 239820; National Institute for Health Research (NIHR) Central Portfolio Management System (CPMS) 38554

Clinical and cost evaluation of two models of specialist intensive support teams for adults with intellectual disabilities who display behaviours that challenge: the IST-ID mixed-methods study

Background: Intensive support teams (ISTs) are recommended for individuals with intellectual disabilities who display behaviours that challenge. However, there is currently little evidence about the clinical and cost-effectiveness of IST models operating in England.// Aims: To investigate the clinical and cost-effectiveness of IST models.// Method: We carried out a cohort study to evaluate the clinical and cost-effectiveness of two previously identified IST models (independent and enhanced) in England. Adult participants (n = 226) from 21 ISTs (ten independent and 11 enhanced) were enrolled. The primary outcome was change in challenging behaviour between baseline and 9 months as measured by the Aberrant Behaviour Checklist-Community version 2.// Results: We found no statistically significant differences between models for the primary outcome (adjusted β = 4.27; 95% CI −6.34 to 14.87; P = 0.430) or any secondary outcomes. Quality-adjusted life-years (0.0158; 95% CI: −0.0088 to 0.0508) and costs (£3409.95; 95% CI −£9957.92 to £4039.89) of the two models were comparable. Conclusions The study provides evidence that both models were associated with clinical improvement for similar costs at follow-up. We recommend that the choice of service model should rest with local services. Further research should investigate the critical components of IST care to inform the development of fidelity criteria, and policy makers should consider whether roll out of such teams should be mandated