Diagnosis and pharmacological management of attention deficit hyperactivity disorder in adults with and without intellectual disability: cohort study using electronic health records.

BACKGROUND: Attention deficit hyperactivity disorder (ADHD) is increasingly diagnosed in adults. People with intellectual disability have higher rates of ADHD yet there is little evidence on the presentation and pharmacological treatment of ADHD in this population or how this differs from the general population. METHODS: Retrospective cohort study using data from electronic health records. Adults with intellectual disability newly diagnosed with ADHD between 2007 and 2022 were matched to adults with ADHD without intellectual disability and their clinical features and treatments were compared. RESULTS: A total of 159 adults with ADHD and intellectual disability and 648 adults with ADHD without intellectual disability formed the dataset. Adults with intellectual disability had higher rates of psychiatric co-morbidity and spent more time under mental health services than those without intellectual disability. They were more likely to have recorded agitation, aggression, hostility, and mood instability, and less likely to have poor concentration recorded in the 12 months prior to the diagnosis of ADHD. Following diagnosis, people with intellectual disability were significantly less likely to be prescribed any medication for ADHD than controls without intellectual disability (adjusted odds ratio 0.60, 95% confidence interval 0.38-0.91), and were less likely to be prescribed stimulants (27.7% v 46.0%, p < 0.001). CONCLUSIONS: The presence of behaviors that challenge in adults with intellectual disability may indicate co-occurring ADHD. Further work to define the safety and efficacy of medication for ADHD in adults with intellectual disability is needed to understand differences in prescription rates and to avoid inequities in care outcomes.

The relationship between clinical presentation and the nature of care in adults with intellectual disability and epilepsy - national comparative cohort study.

BACKGROUND: A quarter of People with Intellectual Disabilities (PwID) have epilepsy compared with 1% of the general population. Epilepsy in PwID is a bellwether for premature mortality, multimorbidity and polypharmacy. This group depends on their care provider to give relevant information for management, especially epilepsy. There is no research on care status relationship and clinical characteristics of PwID and epilepsy. AIM: Explore and compare the clinical characteristics of PwID with epilepsy across different care settings. METHOD: A retrospective multicentre cohort study across England and Wales collected information on seizure characteristics, intellectual disability severity, neurodevelopmental/biological/psychiatric comorbidities, medication including psychotropics/anti-seizure medication, and care status. Clinical characteristics were compared across different care settings, and those aged over and younger than 40 years. RESULTS: Of 618 adult PwID across six centres (male:female = 61%:39%), 338 (55%) received professional care whereas 258 (42%) lived with family. Significant differences between the care groups existed in intellectual disability severity (P = 0.01), autism presence (P < 0.001), challenging behaviour (P < 0.001) and comorbid physical conditions (P = 0.008). The two groups did not vary in intellectual disability severity/genetic conditions/seizure type and frequency/psychiatric disorders. The professional care cohort experienced increased polypharmacy (P < 0.001) and antipsychotic/psychotropic use (P < 0.001/P = 0.008).The over-40s cohort had lower autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD) comorbidity (P < 0.001/P = 0.007), increased psychiatric comorbidity and challenging behaviour (P < 0.05), physical multimorbidity (P < 0.001), polypharmacy (P < 0.001) and antipsychotic use (P < 0.001) but reduced numbers of seizures (P = 0.007). CONCLUSION: PwID and epilepsy over 40 years in professional care have more complex clinical characteristics, increased polypharmacy and antipsychotic prescribing but fewer seizures.

Identifying individuals with intellectual disability who access mental health support and are at high risk for adverse clinical outcomes: cohort study.

BACKGROUND: People with intellectual disability often experience aggressive challenging behaviour and mental health issues. It can be difficult to identify those who are at higher risk of adverse clinical outcomes when in clinical care. AIMS: To characterise potential subgroups in adults with intellectual disability referred to mental health services in those presenting with aggressive behaviour or common mental disorders (CMDs). METHOD: There were 836 adults (≥18 years) with intellectual disability and a record of aggressive challenging behaviour, and 205 patients with intellectual disability and CMDs, who were seen in specialist mental health services over a 5-year period. Cluster analysis was used to define patient characteristics associated with clinical outcome. RESULTS: Distinct patient groups with differentiated profiles were observed in people with intellectual disability displaying aggressive challenging behaviour, and in those presenting with CMDs. Characteristics of the aggressive behaviour group who experienced adverse outcomes included being <30 years old, being male, more mentions of aggression and agitation in their clinical record, a diagnosis of pervasive developmental disorder and prescription of psychotropic medication. Characteristics of the CMD cluster that experienced adverse clinical outcomes were being older, being a White male, having a mild intellectual disability and physical health concerns. CONCLUSIONS: People with intellectual disability who experience adverse clinical outcomes can be identified with a cluster analysis approach of common features, but differ by clinical presentation. This could be used not only to stratify this clinically heterogeneous population in terms of response to interventions, but also improve precision in the development of tailored interventions.

Recording of intellectual disability in general hospitals in England 2006-2019: Cohort study using linked datasets.

BACKGROUND: Accurate recognition and recording of intellectual disability in those who are admitted to general hospitals is necessary for making reasonable adjustments, ensuring equitable access, and monitoring quality of care. In this study, we determined the rate of recording of intellectual disability in those with the condition who were admitted to hospital and factors associated with the condition being unrecorded. METHODS AND FINDINGS: Retrospective cohort study using 2 linked datasets of routinely collected clinical data in England. We identified adults with diagnosed intellectual disability in a large secondary mental healthcare database and used general hospital records to investigate recording of intellectual disability when people were admitted to general hospitals between 2006 and 2019. Trends over time and factors associated with intellectual disability being unrecorded were investigated. We obtained data on 2,477 adults with intellectual disability who were admitted to a general hospital in England at least once during the study period (total number of admissions = 27,314; median number of admissions = 5). People with intellectual disability were accurately recorded as having the condition during 2.9% (95% CI 2.7% to 3.1%) of their admissions. Broadening the criteria to include a nonspecific code of learning difficulty increased recording to 27.7% (95% CI 27.2% to 28.3%) of all admissions. In analyses adjusted for age, sex, ethnicity, and socioeconomic deprivation, having a mild intellectual disability and being married were associated with increased odds of the intellectual disability being unrecorded in hospital records. We had no measure of quality of hospital care received and could not relate this to the presence or absence of a record of intellectual disability in the patient record. CONCLUSIONS: Recognition and recording of intellectual disability in adults admitted to English general hospitals needs to be improved. Staff awareness training, screening at the point of admission, and data sharing between health and social care services could improve care for people with intellectual disability.

Aggressive challenging behavior in adults with intellectual disability: An electronic register-based cohort study of clinical outcome and service use.

BACKGROUND: Aggressive challenging behavior in people with intellectual disability is a frequent reason for referral to secondary care services and is associated with direct harm, social exclusion, and criminal sanctions. Understanding the factors underlying aggressive challenging behavior and predictors of adverse clinical outcome is important in providing services and developing effective interventions. METHODS: This was a retrospective total-population cohort study using electronic records linked with Hospital Episode Statistics data. Participants were adults with intellectual disability accessing secondary services at a large mental healthcare provider in London, United Kingdom, between 2014 and 2018. An adverse outcome was defined as at least one of the following: admission to a mental health hospital, Mental Health Act assessment, contact with a psychiatric crisis team or attendance at an emergency department. RESULTS: There were 1,515 patient episodes related to 1,225 individuals, of which 1,019 episodes were reported as displaying aggressive challenging behavior. Increased episode length, being younger, psychotropic medication use, pervasive developmental disorder (PDD), more mentions of mood instability, agitation, and irritability, more contact with mental health professionals, and more mentions of social and/or home care package in-episode were all associated with increased odds of medium-high levels of aggression. Risk factors for an adverse clinical outcome in those who exhibited aggression included increased episode length, personality disorder, common mental disorder (CMD), more mentions of agitation in-episode, and contact with mental health professionals. PDD predicted better outcome. CONCLUSIONS: Routinely collected data confirm aggressive challenging behavior as a common concern in adults with intellectual disability who are referred for specialist support and highlight factors likely to signal an adverse outcome. Treatment targets may include optimizing management of CMDs and agitation.

COVID-19 pandemic impact on psychotropic prescribing for adults with intellectual disability: an observational study in English specialist community services.

BACKGROUND: Coronavirus disease 2019 (COVID-19) has had a disproportionate impact on people with intellectual disability (PwID). PwID are at higher risk of mental illness and receive psychotropic prescribing 'off licence' also, to manage distress behaviour. The lockdown and reduction of multidisciplinary face-to-face appointments had an impact on care delivery, the recourse possibly being psychotropic prescribing. It is imperative to comprehend the influence the pandemic had on psychotropic prescribing patterns to enable future planning. AIMS: The aim was to understand the impact of the pandemic by comparing psychotropic prescribing patterns during the England lockdown with the prescribing patterns before lockdown in specialist urban and rural psychiatric services for PwID. METHOD: Data was collected from Cornwall (rural) and London (urban) intellectual disability services in England as a service evaluation project to rationalise psychotropic prescribing. PwID in both services open across January 2020 to January 2021 were included. Baseline patient demographics including age, gender, ethnicity, intellectual disability level and neurodevelopmental and psychological comorbidities were collected. Baseline psychotropic prescribing and subsequent % change for each psychotropic group for the two services was compared using Pearson's chi-square and z-statistic (two tailed) with significance taken at P < 0.05. RESULTS: The two centres London (n = 113) and Cornwall (n = 97) were largely comparable but for baseline differences in terms of presence of severe mental illness (37 v. 86, P < 0.001), challenging behaviour (44 v. 57, P < 0.05) and attention-deficit hyperactivity disorder (37 v. 3, P < 0.001). There was an overall increase in psychotropic prescribing during lockdown in urban as compared with rural settings (11% v. 2%). CONCLUSIONS: The pandemic caused an increase in psychotropic prescribing associated with lockdown severity and urban settings. Team structures could have played a role.

The reliability and validity of DSM 5 diagnostic criteria for neurocognitive disorder and relationship with plasma neurofilament light in a down syndrome population.

The validity of dementia diagnostic criteria depends on their ability to distinguish dementia symptoms from pre-existing cognitive impairments. The study aimed to assess inter-rater reliability and concurrent validity of DSM-5 criteria for neurocognitive disorder in Down syndrome. The utility of mild neurocognitive disorder as a distinct diagnostic category, and the association between clinical symptoms and neurodegenerative changes represented by the plasma biomarker neurofilament light were also examined. 165 adults with Down syndrome were included. Two clinicians independently applied clinical judgement, DSM-IV, ICD-10 and DSM-5 criteria for dementia (or neurocognitive disorder) to each case. Inter-rater reliability and concurrent validity were analysed using the kappa statistic. Plasma neurofilament light concentrations were measured for 55 participants as a marker of neurodegeneration and between group comparisons calculated. All diagnostic criteria showed good inter-rater reliability apart from mild neurocognitive disorder which was moderate (k = 0.494). DSM- 5 criteria had substantial concurrence with clinical judgement (k = 0.855). When compared to the no neurocognitive disorder group, average neurofilament light concentrations were higher in both the mild and major neurocognitive disorder groups. DSM-5 neurocognitive disorder criteria can be used reliably in a Down syndrome population and has higher concurrence with clinical judgement than the older DSM-IV and ICD-10 criteria. Whilst the inter-rater reliability of the mild neurocognitive disorder criteria was modest, it does appear to identify people in an early stage of dementia with underlying neurodegenerative changes, represented by higher average NfL levels.

Effects of the COVID-19 pandemic on mental healthcare and services: results of a UK survey of front-line staff working with people with intellectual disability and/or autism.

AIMS AND METHOD: 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. RESULTS: 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. CLINICAL IMPLICATIONS: 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.

Risk factors for in-patient admission among adults with intellectual disability and autism: investigation of electronic clinical records.

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.

The association between loneliness and common mental disorders in adults with borderline intellectual impairment.

BACKGROUND: Loneliness is linked to a number of adverse health outcomes in the general population. There is a lack of evidence on the prevalence and impact of loneliness in people with borderline intellectual impairment. METHODS: Data from the 2014 Adult Psychiatric Morbidity Survey, a national survey of England, was analysed using Weights-adjusted regression analyses to compare the prevalence of loneliness and the association between loneliness and socio-demographic and clinical variables in people with borderline intellectual impairment and the general population. RESULTS: Data from 6877 participants were included. Ten percent (n = 671) of the sample had borderline intellectual impairment and their prevalence of loneliness was 24.5% compared to 18.4% in the general population. This difference was explained by exposure to social disadvantages. Associations were found in both groups between loneliness and being single, unemployed, low income, lower social support, feeling unsafe and discrimination in the past year. Loneliness was associated with lower wellbeing and higher rates of common mental disorders, suicidal thoughts and chronic physical disorders in both groups. Intellectual functioning moderated the relationship between loneliness and income (OR 1.82; 95%CI 1.06 to 3.11) and suicidal thoughts in the last week (OR 0.13; 95% CI 0.02 to 0.93). LIMITATIONS: IQ was measured using the National Adult Reading Test (NART), which is only valid for English speakers and loneliness was measured using a single item. CONCLUSION: Loneliness is more prevalent in people with borderline intellectual impairment. Interventions targeting social disadvantages (e.g. low income) may lead reduce loneliness and vulnerability to mental health problems.

UK psychiatrists' experience of withdrawal of antipsychotics prescribed for challenging behaviours in adults with intellectual disabilities and/or autism.

BACKGROUND: A high proportion of adults with intellectual disabilities are prescribed off-licence antipsychotics in the absence of a psychiatric illness. The National Health Service in England launched an initiative in 2016, 'Stopping over-medication of people with a learning disability [intellectual disability], autism or both' (STOMP), to address this major public health concern. AIMS: To gain understanding from UK psychiatrists working with adults with intellectual disabilities on the successes and challenges of withdrawing antipsychotics for challenging behaviours. METHOD: An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disability (estimated 225). RESULTS: Half of the 88 respondents stated that they started withdrawing antipsychotics over 5 years ago and 52.3% stated that they are less likely to initiate an antipsychotic since the launch of STOMP. However, since then, 46.6% are prescribing other classes of psychotropic medication instead of antipsychotics for challenging behaviours, most frequently the antidepressants. Complete antipsychotic discontinuation in over 50% of patients treated with antipsychotics was achieved by only 4.5% of respondents (n = 4); 11.4% reported deterioration in challenging behaviours in over 50% of patients on withdrawal and the same proportion (11.4%) reported no deterioration. Only 32% of respondents made the diagnosis of psychiatric illness in all their patients themselves. Family and paid carers' concern, lack of multi-agency and multidisciplinary input and unavailability of non-medical psychosocial intervention are key reported factors hampering the withdrawal attempt. CONCLUSIONS: There is an urgent need to develop national guidelines to provide a framework for systematic psychotropic drug reviews and withdrawal where possible.

A structured medication review tool to promote psychotropic medication optimisation for adults with intellectual disability: feasibility study.

OBJECTIVES: To investigate the feasibility of delivering structured psychotropic medication review in community services for adults with intellectual disability (ID). DESIGN: Single-arm feasibility study conducted over a 6-month period. SETTING: Specialist community ID teams in England. PARTICIPANTS: Psychiatrists working with adults with ID and adults with ID who had been prescribed psychotropic medication. INTERVENTION: A structured web-based psychotropic medication review tool (the HealthTracker-based structured medication review) comprising measures of therapeutic benefit and adverse side-effects was made available for use by psychiatrists in routine clinic appointments. A summary measure of medication effectiveness was graphically presented to aid discussion and decision-making. MAIN OUTCOME MEASURES: Feasibility metrics including number of people with ID referred, eligible and recruited, and uptake of the medication review tool in naturalistic clinical settings. Psychiatrist and patient feedback was collected to assess acceptability of the intervention and suggestions for development. RESULTS: Fifteen psychiatrists from five clinical teams took part. In total 94 potentially eligible people with ID were referred, of whom 79 (84%) were recruited and together underwent 97 medication reviews over the 6-month study period. Feedback from participants with ID was favourable. Psychiatrists indicated that the HealthTracker-based structured medication review was broadly acceptable and suggested adaptations to improve integration with existing information technology systems and to enhance patient involvement in the review. CONCLUSIONS: Structured psychotropic medication review can be used in community services for adults with ID as part of a programme of medication optimisation. It would be feasible to test clinical and patient outcomes of the HealthTracker-based medication review in a randomised clinical trial.

Experiences of psychotropic medication use and decision-making for adults with intellectual disability: a multistakeholder qualitative study in the UK.

OBJECTIVES: Understanding patient and carer perspectives is essential to improving the quality of medication prescribing. This study aimed to explore experiences of psychotropic medication use among people with intellectual disability (ID) and their carers, with a focus on how medication decisions are made. DESIGN: Thematic analysis of data collected in individual semistructured interviews. PARTICIPANTS AND SETTING: Fourteen adults with ID, 12 family carers and 12 paid carers were recruited from specialist psychiatry services, community groups, care providers and training organisations in the UK. RESULTS: People with ID reported being highly compliant with psychotropic medication, based on a largely unquestioned view of medication as important and necessary, and belief in the authority of the psychiatrist. Though they sometimes experienced medication negatively, they were generally not aware of their right to be involved in medication decisions. Paid and family carers reported undertaking a number of medication-related activities. Their 'front-line' status and longevity of relationships meant that carers felt they possessed important forms of knowledge relevant to medication decisions. Both groups of carers valued decision-making in which they felt they had a voice and a genuine role. While some in each group described making joint decisions about medication with psychiatrists, lack of involvement was often described. This took three forms in participants' accounts: being uninformed of important facts, insufficiently included in discussions and lacking influence to shape decisions. Participants described efforts to democratise the decision-making process by gathering information, acting to disrupt perceived power asymmetries and attempting to prove their credibility as valid decision-making partners. CONCLUSIONS: Stakeholder involvement is a key element of medication optimisation that is not always experienced in decisions about psychotropic medication for people with ID. Forms of shared decision-making could be developed to promote collaboration and offer people with ID and their carers greater involvement in medication decisions.

A structured programme to withdraw antipsychotics among adults with intellectual disabilities: The Cornwall experience.

BACKGROUND: Antipsychotic medications are used among 19%-58% of adults with intellectual disabilities to manage challenging behaviour against the NICE guideline recommendations. Studies show that it is possible to completely withdraw antipsychotics in about one third of adults with intellectual disabilities and a dose reduction of 50% or more in another third. METHOD: In Cornwall, over three years the present authors developed a structured pathway to withdraw antipsychotics among adults with intellectual disabilities which involved people with intellectual disabilities and their carers, GPs, community learning disability team members and pharmacists. RESULTS: The present authors managed to withdraw antipsychotics totally among 46.5% (33/71) and reduced over 50% of dosage in another 11.3% (8/71) of adults with intellectual disabilities. At three months follow-up no one required hospital admission or change in placement. CONCLUSION: It is possible to withdraw/reduce antipsychotics in a high proportion of adults with intellectual disabilities if a concerted effort is made involving all stakeholders from the outset.

Achieving better health for people with intellectual disability: the power of policy.

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. DECLARATION OF INTEREST: None.

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 Alzheimer's disease. Aims To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimer's disease. METHOD: 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. 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 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.

Association of Focused Medication Review With Optimization of Psychotropic Drug Prescribing: A Systematic Review and Meta-analysis.

Importance: Medication review has been proposed to achieve improved use of psychotropic drugs, but benefits have not been confirmed. Objective: To synthesize evidence for focused psychotropic medication review in medication optimization. Data Sources: Medline, PsycINFO, EMBASE, and CINAHL Plus were searched from inception to February 2018 using the index terms "drug utilization review" and "psychotropic drugs" and synonyms. Additional articles were retrieved using citation tracking and reference checking. Study Selection: Full-length, peer-reviewed articles that reported focused psychotropic medication review were included. Inclusion was determined against prespecified criteria and assessed independently. Data Extraction and Synthesis: Study quality was assessed using National Institutes for Health appraisal tools and informed a structured synthesis of results. Meta-analysis using a random effects model was conducted. Main Outcomes and Measures: Change in the number or dosage of psychotropic medications, change in clinical parameters, change in patient-reported outcomes, and economic data were collected. Results: A total of 26 studies met the inclusion criteria. Four studies were randomized clinical trials (n = 712 participants), while the remainder were before-after studies (n = 7844 participants). Most studies were conducted in elderly individuals, people with dementia, and adults with intellectual disability. Focused psychotropic medication review is a complex intervention; the professional(s) involved, target drug, degree of integration with usual care, and participant involvement varied greatly among the studies. Meta-analysis included 3 studies (n = 652 participants). Psychotropic medication review was associated with a reduction in prescribing of psychotropic drugs compared with control (pooled odds ratio, 0.24; 95% CI, 0.14-0.39) in elderly participants with cognitive impairment living in nursing homes. Before-after studies consistently reported a change in psychotropic drug prescribing after medication review, regardless of the population. Studies that reported the effects of psychotropic medication review on clinical outcomes failed to demonstrate benefit. Economic implications of focused psychotropic medication review were not adequately assessed. The quality of evidence is poor and studies are at risk of bias. Conclusions and Relevance: Focused psychotropic medication review was associated with a reduction in prescribing of psychotropic drugs, but has not been shown to improve clinical outcomes or to provide economic benefit. More robust evidence is needed before programs of focused psychotropic medication review can be recommended as part of routine care for any patient group.