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This study was conducted to evaluate the autism knowledge level and awareness of individuals over the age of 18 who applied to immigrant health centers in Istanbul, Gaziantep and Kilis, where the Syrian immigrant population is dense. This cross-sectional study was conducted between December 2022 and April 2023 in 896 immigrants. The sample of the research consists of immigrants residing in Türkiye and who applied to the immigrant health centers in Istanbul, Gaziantep and Kilis for any reason at the time of the research. A questionnaire consisting of three parts was applied to the immigrant people face-to-face. While 38.4% of the participants were female, 61.6% were male. The mean age of the participants is 34.63 ± 10.74. It was determined that people’s place of residence, whether they have children, marital status and income status have significant effects on autism knowledge levels (p < 0.001). Since the importance of early diagnosis in autism is known, it is of great importance for people to have knowledge and awareness on this issue. This study will investigate the awareness of the immigrant population, who are faced with traumatic events such as war and migration, and will shed light on future intervention studies.
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.
Brain in Hand (BIH) is a UK-based digital self-support system for managing anxiety and social functioning.
Aims
To identify the impact of BIH on the psychological and social functioning of adults with autism.
Method
Adults with diagnosed or suspected DSM-5 (level 1) autism, identified by seven NHS autism services in England and Wales, were recruited for a 12-week prospective mixed-methods cohort study. The primary quantitative outcome measures were the Health of the Nation Outcome Scales for People with Learning Disabilities (HONOS-LD) and the Hospital Anxiety and Depression Scale (HADS). Fisher's exact test explored sociodemographic associations. Paired t-test was utilised for pre–post analysis of overall effectiveness of BIH. Multivariable linear regression models, univariable pre–post analysis, Wilcoxon signed-rank test, logistic regression analysis, Bonferroni correction and normative analysis were used to give confidence in changes identified. A thematic analysis of semi-structured exist interviews following Braun and Clarke's six-step process of 10% of participants who completed the study was undertaken.
Results
Sixty-six of 99 participants completed the study. There was significant reduction in mean HONOS-LD scores, with 0.65 s.d. decrease in those who used BIH for 12 weeks. Significant positive changes were identified in HONOS-LD subdomains of ‘self-injurious behaviours’, ‘memory and orientation’, ‘communication problems in understanding’, ‘occupation and activities’ and ‘problems with relationship’. A significant reduction in the anxiety, but not depression, component of the HADS scores was identified. Thematic analysis showed high confidence in BIH.
Conclusions
BIH improved anxiety and other clinical, social and functioning outcomes of adults with autism.
Almost a quarter of people with intellectual disabilities have epilepsy. This life-long condition adversely affects their health, safety and well-being and carries an increased risk of sudden unexpected death in epilepsy (SUDEP) in this population. This commentary considers what not only health and social services but also communities and people with intellectual disabilities themselves can do to improve outcomes.
Children with intellectual disability are often prescribed psychotropic medication to manage behaviours that challenge. Unfortunately, many receive medication with potentially serious long-term side-effects that has been prescribed inappropriately or for longer than is necessary. NHS England launched STOMP (stopping the over-medication of people with intellectual disability, autism or both with psychotropic medicines) in 2016 to reduce the inappropriate prescribing in adults. This was broadened to include children in 2018 by the addition of STAMP (supporting treatment and appropriate medication in paediatrics). In this article we review the rationale for STOMP–STAMP, highlight the Royal College of Psychiatrists’ position statement on STOMP–STAMP and give clinical advice for psychiatrists who treat children with intellectual disability, autism and/or attention-deficit hyperactivity disorder (ADHD). Importantly, it is essential to consider that ADHD may have been missed and that by diagnosing and treating it, the need for inappropriate antipsychotic medication may be reduced.
Current psychiatric diagnoses, although heritable, have not been clearly mapped onto distinct underlying pathogenic processes. The same symptoms often occur in multiple disorders, and a substantial proportion of both genetic and environmental risk factors are shared across disorders. However, the relationship between shared symptoms and shared genetic liability is still poorly understood.
Aims
Well-characterised, cross-disorder samples are needed to investigate this matter, but few currently exist. Our aim is to develop procedures to purposely curate and aggregate genotypic and phenotypic data in psychiatric research.
Method
As part of the Cardiff MRC Mental Health Data Pathfinder initiative, we have curated and harmonised phenotypic and genetic information from 15 studies to create a new data repository, DRAGON-Data. To date, DRAGON-Data includes over 45 000 individuals: adults and children with neurodevelopmental or psychiatric diagnoses, affected probands within collected families and individuals who carry a known neurodevelopmental risk copy number variant.
Results
We have processed the available phenotype information to derive core variables that can be reliably analysed across groups. In addition, all data-sets with genotype information have undergone rigorous quality control, imputation, copy number variant calling and polygenic score generation.
Conclusions
DRAGON-Data combines genetic and non-genetic information, and is available as a resource for research across traditional psychiatric diagnostic categories. Algorithms and pipelines used for data harmonisation are currently publicly available for the scientific community, and an appropriate data-sharing protocol will be developed as part of ongoing projects (DATAMIND) in partnership with Health Data Research UK.
This article presents three case studies of patients that a child and adolescent mental health service (CAMHS) have supported and its purpose is to encourage discussion of two key learning points. The first of these is the utility of developmental trauma as an approach for children with mental health presentations. The second centres on the importance of multi-agency working when working with young people, principally those within the UK's local authority care system (‘looked after children’), who have had traumatic experiences in order to enhance positive outcomes. We also want to encourage consideration of the implications of developmental trauma for current core CAMHS therapeutic models in an attempt to reach beyond the often held narrative that the trauma formulation implies there is ‘just trauma, no mental illness’.
Neurological diseases often lead to mental disorders in children. After the structure of disorder is identified, an important task is to examine the abilities to compensate developmental delay (Lev S. Vygotsky).
Objectives
The goal of the study was to explore potential of children with opsoclonus-myoclonus syndrome (OMS), which is important for psychocorrection.
Methods
Case study of a boy with idiopathic OMS (aged 3 years 5 months) who was patient at the Psychoneurological Department no. 2 of the Russian Children Clinical Hospital. The following methods were used: analysis of anamnestic data, analysis of patient’s medical record, pathopsychological assessment.
Results
Anamnestic data and medical records indicate the absence of pregnancy pathologies and normal early development. OMS was first detected when the child was aged 2 y. 7 m. Pathopsychological assessment gave the following results: 1) movement disorder (primary disorder) leads to secondary mental disorders; 2) locomotor activity disorders inhibit the child’s use of space and orientation of body in it; 3) secondary defects are detected in constructive activity, speech and drawing. Intact components of the mental processes: 1) the child demonstrates motivation for independent activity despite operational difficulties; 2) in certain activities, the general plan of actions remains intact, i.e., the goal set is actualized in movements and actions; 3) notions about objects, actions with them, planning and performance of movements are intact.
Conclusions
The research demonstrates disbalance between operational difficulties and integrity of semantic orientation, internal planning of actions. The data prove the importance of discussion on abilities of children with OMS to compensate mental disorders.
Genomic medicine is an evolving medical specialty that uses genomic information about an individual as part of their clinical care (e.g. for diagnostic or therapeutic decision-making). It has rapidly grown since the completion of the Human Genome Project in 2003. In England, the National Health Service's Genomic Medicine Service is considered to be the first national healthcare system to offer whole-genome sequencing as part of routine clinical care. Already, genomic medicine is making an impact in the fields of oncology, pharmacology, rare and undiagnosed diseases, infectious disease and neurology. In this article, we present a useful tool kit for clinicians working with individuals with intellectual disability, autism spectrum disorder and epilepsy. This article provides evidence for the importance of genetic testing, conveys an understanding of the range of genetic tests available and their diagnostic yields and how these apply to intellectual disability, autism spectrum disorder and epilepsy. Our simple tool kit gives information on when to refer to a clinical geneticist and where to find resources for clinicians and parents on genetic testing.
Psychiatric morbidity in prisons and police custody is well established, but little is known about individuals attending criminal court. There is international concern that vulnerable defendants are not identified, undermining their right to a fair trial.
Aims
To explore the prevalence of a wide range of mental disorders in criminal defendants and estimate the proportion likely to be unfit to plead.
Method
We employed two-stage screening methodology to estimate the prevalence of mental illness, neurodevelopmental disorders and unfitness to plead, in 3322 criminal defendants in South London. Sampling was stratified according to whether defendants attended court from the community or custody. Face-to-face interviews, using diagnostic instruments and assessments of fitness to plead, were administered (n = 503). Post-stratification probability weighting provided estimates of the overall prevalence of mental disorders and unfitness to plead.
Results
Mental disorder was more common in those attending court from custody, with 48.5% having at least one psychiatric diagnosis compared with 20.3% from the community. Suicidality was frequently reported (weighted prevalence 71.2%; 95% CI 64.2–77.3). Only 16.7% of participants from custody and 4.6% from the community were referred to the liaison and diversion team; 2.1% (1.1–4.0) of defendants were estimated to be unfit to plead, with a further 3.2% (1.9–5.3) deemed ‘borderline unfit’.
Conclusions
The prevalence of mental illness and neurodevelopmental disorders in defendants is high. Many are at risk of being unfit to plead and require additional support at court, yet are not identified by existing services. Our evidence challenges policy makers and healthcare providers to ensure that vulnerable defendants are adequately supported at court.
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.
Aims
To examine clinicians’ experiences of patient care, clinical management and the impact of care delivery.
Method
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.
Results
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.
Conclusions
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.
The prescribing of psychotropic medications for people with an intellectual disability has changed. In many locations across England, antidepressants have become the most widely prescribed psychotropic. In the context of the current NHS England STOMP programme to reduce inappropriate psychotropic prescribing for people with intellectual disability, there is an urgent need to understand whether this change reflects evidence-based use of the medications involved. There has been little analysis into the benefits or problems associated with the change and whether it is of concern. This paper offers a variety of possible explanations and opportunities to improve clinical practice and policy.
Autistic psychiatrists bring strengths and values to the workforce and ask to be acknowledged and supported as part of the Royal College of Psychiatrists’ CIRCLE values and Equality Action Plan. Courage and collaboration are required to jointly learn and innovate, promoting well-being, resilience and excellence for autistic doctors.
Attention-deficit hyperactivity disorder (ADHD) is common among people with intellectual disability. Diagnosing ADHD in this clinically and cognitively complex and diverse group is difficult, given the overlapping psychiatric and behavioural presentations. Underdiagnoses and misdiagnoses leading to irrational polypharmacy and worse health and social outcomes are common. Diagnostic interviews exist, but are cumbersome and not in regular clinical use.
Aims
We aimed to develop a screening tool to help identify people with intellectual disability and ADHD.
Method
A prospective cross-sectional study, using STROBE guidance, invited all carers of people with intellectual disability aged 18–50 years open to the review of the psychiatric team in a single UK intellectual disability service (catchment population: 150 000). A ten-item questionnaire based on the DSM-V ADHD criteria was circulated. All respondents’ baseline clinical characteristics were recorded, and the DIVA-5-ID was administered blinded to the individual questionnaire result. Fisher exact and multiple logistic regressions were conducted to identify relevant questionnaire items and the combinations that afforded best sensitivity and specificity for predicting ADHD.
Results
Of 78 people invited, 39 responded (26 men, 13 women), of whom 30 had moderate-to-profound intellectual disability and 38 had associated comorbidities and on were medication, including 22 on psychotropics. Thirty-six screened positive for ADHD, and 24 were diagnosed (16 men, eight women). Analysis showed two positive responses on three specific questions to have 88% sensitivity and 87% specificity, and be the best predictor of ADHD.
Conclusions
The three-question screening is an important development for identifying ADHD in people with intellectual disability. It needs larger-scale replication to generate generalisable results.
Little is known about the effects of depression before birth on the quality of the mother–infant interaction.
Aims
To understand whether depression, either in pregnancy or in lifetime before pregnancy, disrupts postnatal mother–infant interactions.
Method
We recruited 131 pregnant women (51 healthy, 52 with major depressive disorder (MDD) in pregnancy, 28 with a history of MDD but healthy pregnancy), at 25 weeks’ gestation. MDD was confirmed with the Structured Clinical Interview for DSM-IV Disorders. Neonatal behaviour was assessed at 6 days with the Neonatal Behavioural Assessment Scale, and mother–infant interaction was assessed at 8 weeks and 12 months with the Crittenden CARE-Index.
Results
At 8 weeks and 12 months, dyads in the depression and history-only groups displayed a reduced quality of interaction compared with healthy dyads. Specifically, at 8 weeks, 62% in the depression group and 56% in the history-only group scored in the lowest category of dyadic synchrony (suggesting therapeutic interventions are needed), compared with 37% in the healthy group (P = 0.041); 48% and 32%, respectively, scored the same at 12 months, compared with 14% in the healthy group (P = 0.003). At 6 days, neonates in the depression and history-only groups exhibited decreased social-interactive behaviour, which, together with maternal socioeconomic difficulties, was also predictive of interaction quality, whereas postnatal depression was not.
Conclusions
Both antenatal depression and a lifetime history of depression are associated with a decreased quality of mother–infant interaction, irrespective of postnatal depression. Clinicians should be aware of this, as pregnancy provides an opportunity for identification and intervention to support the developing relationship.
Globally, there has been an emphasis on the importance and value of involving people with lived experience of mental health conditions in service delivery, development and leadership. Such individuals have taken on various roles, from peer support specialists and other specialised professions to leadership in mainstream industries. There are, however, still obstacles to overcome before it is possible to fully include people with lived experience at all levels in the mental health and related sectors. This article discusses the benefits, both to the individual and to the public, of involving persons with lived experience in service delivery, development and leadership.
This editorial is co-written by a developmental psychologist and a young climate activist. We start by showing how the climate crisis is imposing a heavy psychological burden on children and youth, both from experiencing climate-related disasters and from the knowledge that worse is to come. We then describe the global movement of youth demanding urgent climate action. We conclude that health professionals can support young people in many ways, but particularly by supporting their capacity to take action, raising awareness about the impact of the climate crisis on youth mental and physical health, and taking action themselves to work for a secure climate future.
We assessed the clinical utility of the parent-reported Strengths and Difficulties Questionnaire (SDQ) as a screen for emotional and behavioural difficulties in 626 children and young people with intellectual disability. Using the Developmental Behavior Checklist (DBC2-P) to determine clinical caseness, the area under the curve for the SDQ total difficulties score was 0.876 (95% CI 0.841–0.911), indicating that it is a good measure for identifying significant emotional and behavioural difficulties requiring further investigation. Analyses supported the use of the same SDQ cut-off for those with and without intellectual disability, which may assist with consistent and comparable assessment in clinical practice.
Intellectual and developmental disabilities (IDDs) and psychiatric disorders frequently co-occur. Although each has been associated with negative outcomes, their combined effect has rarely been studied.
Aims
To examine the likelihood of five negative health and healthcare outcomes for adults with IDD and mental health/addiction disorders (MHAs), both separately and together. For each outcome, demographic, clinical and system-level factors were also examined.
Method
Linked administrative data-sets were used to identify adults in Ontario, Canada, with IDD and MHA (n = 29 476), IDD-only (n = 35 223) and MHA-only (n = 727 591). Five outcomes (30-day readmission, 30-day repeat ED visit, delayed discharge, long-term care admission and premature mortality) were examined by logistic regression models with generalised estimating equation or survival analyses. For each outcome, crude (disorder groups only) and complete (adding biosocial covariates) models were run using a general population reference group.
Results
The IDD and MHA group had the highest proportions across outcomes for both crude and complete models. They had the highest adjusted ratios for readmissions (aOR 1.93, 95%CI 1.88–1.99), repeat ED visit (aOR 2.00, 95%CI 1.98–2.02) and long-term care admission (aHR 12.19, 95%CI 10.84–13.71). For delayed discharge, the IDD and MHA and IDD-only groups had similar results (aOR 2.00 (95%CI 1.90–2.11) and 2.21 (95%CI 2.07–2.36). For premature mortality, the adjusted ratios were similar for all groups.
Conclusions
Poorer outcomes for adults with IDD, particularly those with MHA, suggest a need for a comprehensive, system-wide approach spanning health, disability and social support.
We examine epidemiological evidence for the central role of inequalities (principally economic) in driving the onset of mental disorders, physical ill health and premature mortality. We locate the search for solutions in current UK contexts, and include known and likely effects of the COVID-19 pandemic. Prevention of mental disorders and adverse outcomes such as premature mortality must begin with efforts to mitigate rising poverty-inequality.