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Up to a fifth of people with intellectual disabilities display challenging behaviour that has a significant impact on their health and quality of life. Psychotropic medication does not appear to confer any clinical benefits beyond risk reduction in acute situations. However, very few non-pharmacological treatments have clear evidence of clinical and cost-effectiveness and there is therefore often a dearth of advice as to which components or interventions would be helpful. To our knowledge no single model has been developed to provide a clear path from understanding the behaviour to the implementation of a therapeutic approach for such a complex clinical problem. In this article we describe a stepped-care model that needs to be further operationalised in the assessment and management of behaviours that challenge in adults with intellectual disabilities.
People living with intellectual and developmental disabilities (IDD) have suffered disproportionately in health outcomes and general well-being during the COVID-19 pandemic. There is emerging evidence of increased psychological distress. Increased strain has also fallen on clinicians managing the psychological needs of people with IDD, in the context of learning new technologies, staff shortages, reduced services and paused training opportunities.
To examine clinicians’ experiences of patient care, clinical management and the impact of care delivery.
A mixed fixed-response and free-text survey comprising 28 questions covering four areas (responder demographics, clinical practice, changes to local services and clinician experiences) was developed, using the STROBE guidance. It was disseminated through an exponential snowballing technique to clinicians in seven high-income countries. Quantitative data were analysed and presented with Microsoft Excel. Qualitative data were coded and thematically analysed, and presented with in-text quotations.
There were 139 respondents, mostly senior physicians (71%). Two-thirds reported over 10 years working in the field. Quantitative findings include increased clinician stress (77%), referrals (53%), patient distress presentations (>70%), patient isolation (73%) and carer burden (89%), and reduced patient participation in daily activities (86%). A third reported increased psychotropic prescribing. Qualitative analysis outlined changes to clinical practice, particularly the emergence and impact of telehealth.
In the countries surveyed, the pandemic has not only had a significant impact on people with IDD, but also their carers and clinicians. A proactive, holistic international response is needed in preparedness for future public health emergencies.
This chapter provides an evidence-based overview of predominantly cognitive behavioral interventions for common mental disorders, that is, anxiety and depression, undertaken in the field of intellectual disabilities (ID). The evidence was generated by reviewing international publications between 1980 and 2020 which identified the use of cognitive behavioral therapy (CBT), including third wave CBT therapies, and was also informed by our extensive clinical practice in the field of ID. The first section provides an outline of the historical and sociological context of psychological therapies and the possible barriers to CBT in an ID population. The chapter includes a summary of how intellectual disabilities, depression, and anxiety disorders are defined. It considers key issues, problems and solutions associated with applying CBT and its associated approaches in an ID population. Finally, two case vignettes introduce the reader to CBT techniques to illustrate ideas that will help clients using CBT to bring about a reduction in self-defeating behaviors. With the aid of a support worker and electronic sources, there is a much broader range of resources to help client and therapist journey and support the therapeutic alliance.
To describe characteristics of adults with intellectual disability (ID) and/or autism spectrum disorder (ASD) accessing care in one mental health Trust.
To explore factors associated with in-patient admission/risk of re-admission within 12 months of discharge.
There is concern that adults with intellectual disability and those with autism spectrum disorder are frequently admitted to mental health hospitals. The evidence from NHS datasets suggests that this remains a significant issue and is associated with personal, social and economic costs.
Adults (≥ 18 years) with ICD-10 diagnosis of “mental retardation” and/or autism who had accessed care in the Camden and Islington Foundation Trust were identified using the Clinical Record Interactive Search (CRIS). The identification process was validated through cross checking of free text in the electronic clinical notes. We compared demographic and clinical characteristics and service use, including length of admission, of 315 individuals with ASD and 339 with ID (with or without ASD). Logistic regression was used to explore factors associated with in-patient admission and re-admission within 12 months of discharge.
A greater proportion of adults with ID (with or without ASD) had a diagnosis of psychosis, substance misuse, or dementia whereas diagnosis of anxiety disorder was greater in those with ASD. Antipsychotics and other psychotropics were twice as likely to be prescribed for the ID ± group. Admission to psychiatric in-patient care was greater in those with ID ± ASD (adjusted OR 4.00, 95% confidence interval (CI) 2.41-6.63), men (aOR 2.28, 95%CI 1.39-3.75), younger adults (aOR 0.98, 95%CI 0.97-1.00), and in those with a diagnosis of schizophrenia spectrum disorder (aOR 5.08, 95%CI 3.00-8.61), affective disorder (aOR 2.23, 95%CI 1.29-3.83), personality disorder (aOR 1.94, 95%CI 1.02-3.68), and record of previous inpatient admission (aOR 2.18, 95%CI 1.17-4.05). Having ASD alone was associated with a greater risk of re-admission within one year of discharge, although this difference was not statistically significant (aOR 0.70, 95% CI 0.32-1.52). Comorbid diagnoses of affective disorder or personality disorder were the only significant associations with re-admission (aOR 3.11, 95%CI 1.34-7.23 and aOR 8.28, 95%CI 2.85-24.04, respectively).
These findings provide the first longitudinal investigation into the acute care pathway for adults with ID and/or ASD in the NHS. Replication in other trusts is now needed to inform “at risk of admission” registers and guide targeted interventions to prevent admission.
Mental health services have changed the way they operate during the COVID-19 pandemic. We investigated the challenges and innovations reported by staff working in services for people with intellectual disability and/or autism in National Health Service (NHS) and non-NHS sectors, and in in-patient and community settings.
Data were drawn from 648 staff who participated in a UK-wide online survey. Issues around infection risk and mitigation were more important to those working in the NHS and in-patient settings. Community staff were more likely to express concern about the practicalities of a rapid shift to remote working and engaging patients remotely. Qualitative data revealed support for maintaining remote staff working and remote service provision post-pandemic.
Given the current emphasis on community support for people with intellectual disability and/or autism, the focus of research and clinical practice should be the development of accessible and effective models of remote service provision.
Adults with intellectual disability or autism are at risk of psychiatric admission which carries personal, social and economic costs. We identified 654 adults with intellectual disability or autism in the electronic clinical records of one mental health trust. We investigated the demographic and clinical factors associated with admission and readmission after discharge. Young male patients with intellectual disability, schizophrenia and previous admissions are most at risk of the former, whereas affective and personality disorders predict the latter. Both community intellectual disability services and mental health crisis care must focus on providing effective support for those patients.
Although the research base on mental health in intellectual disabilities is advancing, there are long-standing barriers that hinder successful completion of funded studies. A variety of stakeholders hold the key to mitigating the challenges and arriving at sustainable solutions that involve researchers, experts by experience, clinicians and many others in the research pathway. Lessons learned during the COVID-19 pandemic can also contribute to improvements in the conduct of research in the medium to long term. People with an intellectual disability and mental health conditions deserve high standards of evidence-based care.
Approximately 18% of adults with intellectual disabilities 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 in-patient stays.
To identify and describe the geographical distribution and characteristics of ISTs, and to develop a typology of IST service models in England.
We undertook a national cross-sectional survey of 73 ISTs. A hierarchical cluster analysis was performed based on six prespecified grouping factors (mode of referrals, size of case-load, use of outcome measures, staff composition, hours of operation and setting of service). A simplified form of thematic analysis was used to explore free-text responses.
Cluster analysis identified two models of IST provision: (a) independent and (b) enhanced provision based around a community intellectual disability service. ISTs aspire to adopt person-centred care, mostly use the framework of positive behaviour support for behaviour that challenges, and report concerns about organisational and wider context issues.
This is the first study to examine the delivery of intensive support to people with intellectual disability and behaviour that challenges. A two-cluster model of ISTs was found to have statistical validity and clinical utility. The clinical heterogeneity indicates that further evaluation of these service models is needed to establish their clinical and cost-effectiveness.
Behaviour that challenges in people with intellectual disability is associated with higher healthcare, social care and societal costs. Although behavioural therapies are widely used, there is limited evidence regarding the cost and quality-adjusted life-years (QALYs).
We aimed to assess the incremental cost per QALY gained of therapist training in positive behaviour support (PBS) and treatment as usual (TAU) compared with TAU using data from a cluster randomised controlled trial (Clinical Trials.gov registration: NCT01680276).
We conducted a cost-utility analysis (cost per QALY gained) of 23 teams randomised to PBS or TAU, with a total of 246 participants followed up over 36 months. The primary analysis was from a healthcare cost perspective with a secondary analysis from a societal cost perspective.
Over 36 months the intervention resulted in an additional 0.175 QALYs (discounted and adjusted 95% CI −0.068 to 0.418). The total cost of training in and delivery of PBS is £1598 per participant plus an additional cost of healthcare of £399 (discounted and adjusted 95% CI −603 to 1724). From a healthcare cost perspective there is an 85% probability that the intervention is cost-effective compared with TAU at a £30 000 willingness to pay for a QALY threshold.
There was a high probability that training in PBS is cost-effective as the cost of training and delivery of PBS is balanced out by modest improvements in quality of life. However, staff training in PBS is not supported given we found no evidence for clinical effectiveness.
There is little evidence to guide pharmacological treatment in adults with Down syndrome and Alzheimer's disease.
To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimer's disease.
This was a naturalistic longitudinal follow-up of a clinical cohort of 310 people with Down syndrome diagnosed with Alzheimer's disease collected from specialist community services in England.
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.
Cholinesterase inhibitors appear to offer benefit for people with Down syndrome and Alzheimer's disease that is comparable with sporadic Alzheimer's disease; a trial to test the effect of earlier treatment (prodromal Alzheimer's 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.
People with intellectual disability have high mental and physical healthcare needs, which must be addressed on individual, local and national levels. Policy interventions informed by research and stakeholder views and extending beyond a focus on health are needed to reduce inequities in this group.
Staff training in positive behaviour support (PBS) is a widespread treatment approach for challenging behaviour in adults with intellectual disability.
To evaluate whether such training is clinically effective in reducing challenging behaviour during routine care (trial registration: NCT01680276).
We carried out a multicentre, cluster randomised controlled trial involving 23 community intellectual disability services in England, randomly allocated to manual-assisted staff training in PBS (n = 11) or treatment as usual (TAU, n = 12). Data were collected from 246 adult participants.
No treatment effects were found for the primary outcome (challenging behaviour over 12 months, adjusted mean difference = −2.14, 95% CI: −8.79, 4.51) or secondary outcomes.
Staff training in PBS, as applied in this study, did not reduce challenging behaviour. Further research should tackle implementation issues and endeavour to identify other interventions that can reduce challenging behaviour.
To develop a programme to help undergraduate medical students and postgraduate trainees to improve their skills in communicating with people with intellectual disabilities through teaching sessions that had input from simulated patients with intellectual disabilities. We conducted four sessions of training for 47 undergraduate 4th-year medical students. The training involved a multiprofessional taught session followed by a clinical scenario role-play with simulated patients who were people with intellectual disabilities. The training was assessed by completing the healthcare provider questionnaire before and after the training.
There were improvements in the students' perceived skill, comfort and the type of clinical approach across all three scenarios.
By involving people with intellectual disabilities in training medical students there has been a significant improvement in students' communication skills in areas of perceived skills, comfort and type of clinical approach which will raise the quality of care provided by them in the future.
Challenging behaviour is common in intellectual disability but it is difficult to diagnose and manage. It can adversely affect the quality of life of the individual and cause the breakdown of community placements, resulting in hospital admission. This article discusses the aetiology of challenging behaviour (including the complex relationship with mental illness), diagnostic problems, the current evidence base in relation to psychosocial and pharmacological treatments, and service delivery.
• Understand the aetiological basis of challenging behaviour.
• Understand the role of functional analysis.
• Appreciate the evidence base in relation to the psychological and pharmacological treatment of challenging behaviour.