Search

Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross-sectional online survey developed with patient facing organisations was circulated to parents of children with intellectual disabilities and/or autism using an exponential and non-discriminatory snowballing method for recruitment. A smaller sample were purposively sampled for their in-depth experiences. Results: Of 68 responses, people were open to discussing constipation and knowledgeable about risk factors. In the qualitative interviews, of 15 parents, they wanted to be treated as an expert in their child's care. They desired a service that was more responsive when in difficulty. While wanting more information about medication options, parents want a more holistic approach. Conclusions: Services need more emphasis on holistic management. Listening to parents and treating them as experts is important.

Background: Overprescribing of off-licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, 'STopping Over-Medication of People with learning disabilities, autism or both (STOMP)', to address this concern. STOMP is supposed to encourage psychiatrists in the United Kingdom and elsewhere to rationalise psychotropic medication use in people with intellectual disabilities. The current study aims to gather UK psychiatrists' views and experience of implementing the STOMP initiative. Methods: An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disabilities (estimated 225). Two open-ended questions allowed participants to write comments in response to these questions in the free text boxes. One question asked about the challenges psychiatrists faced locally to implement STOMP, and the other asked for examples of successes and positive experiences from the process. The free text data were analysed using a qualitative method with the help of the NVivo 12 plus software. Results: Eighty-eight (estimated 39%) psychiatrists returned the completed questionnaire. The qualitative analysis of free-text data has shown variation within services in the experience and views of the psychiatrists. In areas with good support for STOMP implementation provided through adequate resources, psychiatrists reported satisfaction in the process with successful antipsychotic rationalisation, better local multi-disciplinary and multi-agency working, and increased awareness of STOMP issues among the stakeholders such as people with intellectual disabilities and their caregivers and multidisciplinary teams, and improved quality of life caused by reduced medication-related adverse events in people with intellectual disabilities. However, where resource utilisation is not optimum, psychiatrists seemed dissatisfied with the process with little success in medication rationalisation. Conclusions: Whereas some psychiatrists are successful and enthusiastic about rationalising antipsychotics, others still face barriers and challenges. Much work is needed to achieve a uniformly positive outcome throughout the United Kingdom.

Background: In the United Kingdom, policy change has led to specialist intellectual disability inpatient bed reduction. Little evidence exists assessing the results for patients admitted to such units. This study evaluates the outcomes of a specialist intellectual disability inpatient unit. Method: Gender/age/ethnicity/intellectual disability severity/co-morbid psychiatric/developmental disorders, treatment length and stay data were collected. The health of the nation outcome scales for people with learning disabilities (HoNOS-LD) scores at admission, treatment completion and discharge were recorded. Analysis of these multiple variables and correlations within different patient groups was investigated using various statistical tests. Results: Of 169/176 patients (2010-2018), admission to discharge, HoNOS-LD global and all individual items score decreased significantly, for all patient categories. Treatment completion to discharge duration was significant for the whole cohort. Conclusions: This is the largest study of intellectual disability inpatient outcomes. Discharge from the hospital appears not associated with duration of treatment. Using HoNOS-LD to demonstrate treatment effectiveness is recommended.

Background: People with mild intellectual disability (ID) experience a higher prevalence of mental health (MH) problems in comparison to the general population, yet there is little consensus on the most appropriate type and nature of services for support and treatment for this specific group of individuals. Objective: The objective of this scoping review is to explore the current evidence for the organization, structure, and delivery of mental health services for people with mild ID. Methods: The PRISMA-SCr (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was followed. Online databases were used to identify systematic reviews, meta-analyses, scoping reviews, or guidelines published between 2003 and 2020. Articles were reviewed using Roever & Zoccai criteria for critical appraisal of systematic reviews and meta-analyses. Results: 130 records were identified, of which 91 were longlisted. Of these, 28 articles were shortlisted after review of abstracts prior to review of full-text papers. The review included 11 studies: one meta-analysis, eight systematic reviews, and two scoping reviews. These studies approached the provision of mental health services for individuals with mild ID from various angles -- including service organization and access, therapies, and patient feedback. Conclusions: According to the Roever & Zoccai criteria, there was a lack of high-quality evidence, which limited the findings and conclusions. The available evidence suggested that despite higher levels of psychopathology there is not a corresponding consideration in care for individuals with mild ID in general psychiatric services. There was no conclusive evidence on better level of services or outcomes being provided either by the general psychiatric services or specialist ID psychiatric services. Some evidence was found for intensive case management and assertive outreach for individuals with mild ID, but this was not replicated in further studies. In terms of treatment, there was no high-quality evidence found for pharmacological interventions, with some limited evidence around psychological therapy for the treatment of depression in this vulnerable population. Overall, it was found that an increase in staff training would be beneficial in terms of timely access to services and appropriate treatment. There is a need for inclusive, evidence-based guidance as regards service development for people with mild ID and MH problems.

Background: Lithium is well described in managing certain mental illnesses including in people with intellectual disabilities (ID). It requires regular monitoring particularly of serum levels and relevant biochemistry. However, existing monitoring protocols do not provide ID-specific guidance leading to increased risk of poor-quality care. This study aims to construct a protocol to aid monitoring in primary care in this cohort. Need for a protocol is further explored by retrospectively auditing monitoring standards in people with ID in Cornwall, UK, and confirming gaps in current practice which may be minimized with clearer guidance. Methods: Protocol was developed drawing on existing guidance for the general population and considering challenges and best practice associated with monitoring in people with ID. The protocol was applied as an audit to all people with ID currently on lithium on the GP ID register across all GP practices in the county of Cornwall, UK, to explore current standards of monitoring to help elucidate whether increased guidance may be of use. Results: A novel protocol was developed and supplemented with additional information which is hoped to provide a useful reference guide in primary care. During audit, nine of the ten people with ID receiving prescriptions for lithium across the county were identified and data collected. Audit showed monitoring was to a reasonably high standard, though blood tests and annual health checks were not always performed within preferred maximum timeframes. Conclusions: This protocol represents the first ID-specific approach for monitoring lithium and associated health parameters in primary care. Auditing against the protocol showed gaps in current standards of care which may indicate a need for clearer published guidance. Some groupings of results highlighted particular areas of need. We hope that clear protocols, such as ours, may aid safe and timely monitoring of lithium treatment in future.

Introduction: Individuals with intellectual disability (ID) are at significant risk of developing emotional trauma and post-traumatic stress disorder (PTSD) due to altered neuropsychological functioning, increased chance of experiencing adverse life events, difficulty expressing emotions, diagnostic overshadowing and institutional failures. Eye Movement Desensitization and Reprocessing Therapy (EMDR) is efficacious in the general population, but research lacks evidence to suggest EMDR remains effective in ID. This paper assesses the evidence available on the use of EMDR to treat PTSD in ID and provide direction for future research. Methods: A scoping review using PRISMA guidance was conducted. PsychInfo, Embase and Medline were completed using the NICE Health Databases Advanced Search in March 2020. Supplementary searches of Joanna Briggs and ongoing randomized controlled trials were also conducted. The terms used related to Intellectual disability and EMDR therapy. Searches were conducted without the use of PTSD or trauma-related terms to increase the number of identified articles. Inclusion criteria involved the use of EMDR therapy as the primary intervention using a population of individuals with ID. Only articles available in English were included. There were no exclusions related to the study design. All study designs and publication types were included in this review to capture the breadth of information that might be available on the topic. Articles identified were summarized, appraised and collated into tables. Papers were assessed for quality using the GRADE criteria. Results: Out of 16 identified publications, 13 demonstrated positive results and 3 less favorable. Heterogeneity among participants, variations in EMDR protocol/adaptations, and variation in trauma and PTSD assessment were prevalent. Conclusions: It is not possible to conclude whether EMDR is efficacious in people with ID. Future studies need to use homogenized populations, standardized EMDR protocol and validated trauma and PTSD assessments.

1.1 Background: In the light of the current national guidance to reduce the number of inpatient learning disability beds, a review was completed of the quality of lives of the people who had been former inpatients in Cornwall at the time of closure of the learning disability inpatient facilities almost 10 years before transforming care. 1.2 Materials and Methods: All former inpatients who were discharged from the learning disability inpatient setting in Cornwall were invited to participate either directly or through their carers or family members. Measures of current activity levels and semi-structured interviews on quality of life were conducted. 1.3 Results: The majority interviewed had person-centred plans, health action plans and positive behaviour support plans. Guernsey Community Participation & Leisure Assessment showed overall the study group did not meet comparative standards laid out by the scale in any of the subdomains (p < 0.05). Peoples' lives were varied, with a lack of informal relationships, meaningful occupation, homeownership and advocacy being relatively poor for all. Alongside this, to enable people to have safer lives, restrictive practices were commonplace particularly continuous supervision and use of psychotropic medication to manage behavioural risk. 1.4 Conclusions: This study highlights that people with complex concerns with a history of placement breakdowns and past institutionalisation can be settled successfully and safely in local communities. However, it is difficult for many of them to achieve a satisfactory quality of life long term. The obligation for this lies with service providers to provide adequate support to overcome that difficulty.

Background and purpose: Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared. Methods: A cross‐sectional online mixed methodology survey of 17 Likert and free‐text response questions using validated themes was circulated via International League against Epilepsy/Epilepsy Specialist Nurses Association in the UK and International League against Epilepsy/Epilepsinet in Norway using a non‐discriminatory exponential snowballing technique leading to non‐probability sampling. Quantitative data were analysed using descriptive statistics and Mann–Whitney, Kruskal–Wallis, chi‐squared and Fisher's exact tests. Significance was accepted at p < 0.05. Thematic analysis was conducted on free‐text responses. Results: Of 309 (UK 197, Norway 112) responses, UK clinicians were more likely to have experienced an SUDEP (p < 0.001), put greater importance on SUDEP communication (p < 0.001), discuss SUDEP with all PWE particularly new patients (p < 0.001), have access and refer to bereavement support (p < 0.001) and were less likely to never discuss SUDEP (p < 0.001). Significant differences existed between both countries' neurologists and nurses in SUDEP counselling with UK clinicians generally being more supportive. UK responders were more likely to be able to identify bereavement support (p < 0.001). Thematic analysis highlighted four shared themes and two specific to Norwegians. Discussion: Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE there remain hesitation, avoidance and subjectivity in clinicians having SUDEP‐related conversations, more so in Norway than the UK. Training and education are required to improve communication, engagement and decision making. [ABSTRACT FROM AUTHOR]

Objective: This study was undertaken to validate a set of candidate biomarkers of seizure susceptibility in a retrospective, multisite case–control study, and to determine the robustness of these biomarkers derived from routinely collected electroencephalography (EEG) within a large cohort (both epilepsy and common alternative conditions such as nonepileptic attack disorder). Methods: The database consisted of 814 EEG recordings from 648 subjects, collected from eight National Health Service sites across the UK. Clinically noncontributory EEG recordings were identified by an experienced clinical scientist (N = 281; 152 alternative conditions, 129 epilepsy). Eight computational markers (spectral [n = 2], network‐based [n = 4], and model‐based [n = 2]) were calculated within each recording. Ensemble‐based classifiers were developed using a two‐tier cross‐validation approach. We used standard regression methods to assess whether potential confounding variables (e.g., age, gender, treatment status, comorbidity) impacted model performance. Results: We found levels of balanced accuracy of 68% across the cohort with clinically noncontributory normal EEGs (sensitivity =61%, specificity =75%, positive predictive value =55%, negative predictive value =79%, diagnostic odds ratio =4.64, area under receiver operated characteristics curve =.72). Group level analysis found no evidence suggesting any of the potential confounding variables significantly impacted the overall performance. Significance: These results provide evidence that the set of biomarkers could provide additional value to clinical decision‐making, providing the foundation for a decision support tool that could reduce diagnostic delay and misdiagnosis rates. Future work should therefore assess the change in diagnostic yield and time to diagnosis when utilizing these biomarkers in carefully designed prospective studies. [ABSTRACT FROM AUTHOR]

Background: People with epilepsy (PWE) have a higher fracture risk than nonepilepsy populations. Antiepileptic drugs (AEDs) cause bone loss. Limited physical activity and poor dietary intake increase fracture risk in PWE. People with an intellectual disability have higher prevalence of epilepsy, likely to be on multiple AEDs, with poorer response, thus at a higher risk of sustaining fractures compared to general population. Ignorance of these issues can add to the risk. The study ascertains bone health knowledge in people with epilepsy and their carers. Materials and Methods: A literature search on intellectual disability, epilepsy, bone health and patient knowledge informed a codesign survey with a service user group. An easy read survey version was created. It was disseminated via NHS Trust clinicians to all service users and their carers receiving services from a specialist learning disability team (catchment population-1,000,000). Results: Thirty-four carers and 23 service users of total 148 eligible (response rate 38.5%) responded to the questionnaires disseminated by clinicians. Approximately 50% of carers and 25% of people with epilepsy had awareness of the increased fracture risk. Less than 25% of the respondents associated AEDs to bone loss. Less than a third were aware of protective strategies to reduce fracture risk. Conclusions: The survey showed significant knowledge shortcomings of both service user and carer groups of relationship between intellectual disability, epilepsy, its medications, fracture risk, and available risk reduction strategies. Clinicians need to be proactive in providing service users and carers with information around bone health and epilepsy.

Introduction: People with learning disabilities in the United Kingdom are being incarcerated in hospital settings due to lack of suitable community care and support. Factors influencing discharge from institutional/hospital care to enable successful community living have not been explored systematically. Method: A systematic review using the PRISMA guidance identified studies via five electronic database searches of Medline, CINAHL, Embase, psychINFO, and Cochrane Library. A predesigned inclusion/exclusion criterion was applied to selected articles. A thematic analysis approach was used. Results: Six qualitative and twelve quantitative articles were identified and divided into three broad themes of support, housing, and health. A further nineteen articles were identified as of peripheral interest. Conclusion: Factors affording a successful transition from hospital/institution to community are discussed. Suitable standards of housing, staff support/training, and health-care access influence the success of sustainable repatriation. An evidence-based tool kit is proposed from available factors to enable safe, sustainable, and timely discharge.

Introduction: Having a diagnosis of Down syndrome (DS) is associated with intellectual disability (ID), pervasive developmental disorders and Alzheimer's dementia (AD). The association between these conditions has not been well evaluated. This paper looks to examine the current evidence pertaining to the relationship between dementia in people with DS and severity of ID and the presence of pervasive developmental disorders. Methods: A scoping review using PRISMA guidance was undertaken. Medline, Cochrane database, NHS evidence, Trial registers and Open Grey were searched in December 2018 and an updated search was completed in July 2020. Three search strategies were used to retrieve articles relating to DS, dementia, pervasive developmental disorders (including autism, autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD)) and severity of ID. Studies were included if they met the pre-defined inclusion criteria of investigating an association between autism/ASD, ADHD, or severity of ID and the development of dementia in people with DS. Studies were excluded if they did not include primary data, if the population included non-Down causes of ID, or if no specific outcome measure related to comorbid autism/ASD, ADHD, or severity of ID and dementia in people with a diagnosis of DS were reported. There were no exclusions related to study design. Papers were assessed for quality using the Mixed Methods Appraisal Tool (MMAT). Results: The search identified 15 papers, publishing results from 12 studies, relating to severity of ID, DS and dementia. No papers were identified relating to pervasive developmental disorders, DS and dementia. There is limited evidence on how severity of ID impacts on the presentation, diagnosis, management or prognosis of dementia in people with DS. However, no evidence was found on comorbid pervasive developmental disorders, DS and dementia. Conclusion: This paper has identified multiple areas for future research. There is an urgent need for longitudinal studies into the presentation, development and progression of dementia in people with DS ensuring the severity of ID and comorbid pervasive developmental conditions are captured regularly to understand their influence on the dementia etiology and outcome.

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.

Background: Intellectual disability (ID) is associated with polypharmacy particularly off-label psychotropics for "challenging behaviour." NHS England introduced the "stopping over medication of people with a learning disability (LD), autism or both" (STOMP) initiative. As ID services are a professionally diverse group, it is important to know whether teams have suitable knowledge to deliver STOMP. The impact of delivering bespoke STOMP training was evaluated. Methods: A 21-item multiple-choice questionnaire was distributed to three specialist ID teams in the south-west of England. Current best practice and national guidance knowledge on psychotropic medication use in ID were assessed. One team received bespoke training covering the content of the questionnaire prior to completion. Results: Survey participation was 44% (21/48) by the trained team, 34% (15/44) and 70% (7/10) in the untrained teams. The trained team participants scored over 80% on 19/21 questions compared to 15/21 and 16/21 in the untrained teams. Subspeciality analysis of pooled data (n = 43) showed nursing scored more than 80% on 16/21 questions, psychology 15/21 and allied health professionals (AHPs) 19/21. Nursing and psychology both reported STOMP to be a priority. Majority responded "yes" to potentially being involved in STOMP. Conclusions: Better STOMP knowledge and understanding of best practice and guidelines are associated with training. Nursing and psychology are essential to STOMP delivery but scored lower than AHPs. We recommend semi-structured STOMP training developed locally with national underpinnings for all specialist ID teams, particularly focussed on front-line staff directly involved in the management of challenging behaviour.

Background: The use of psychotropic medication to manage challenging behaviours of people with intellectual disabilities is a contentious issue which NHS England has now focused on. This paper looks to evaluate this within the multidisciplinary context. Method: Records of clients (n = 106) open to a Community Intellectual Disabilities team for care relating to challenging behaviours were examined. Those recommended psychotropic medications in the absence of a mental health diagnosis were scrutinised for supporting MDT assessments. Results: Over half the clients with challenging behaviours were being prescribed psychotropic medications and many of those had very few MDT assessments to inform care. Conclusions: This study demonstrates the extent psychotropics are used in the absence of MDT informed support for people with intellectual disabilities and behaviours that challenge. A vision to simply withdraw such medication might be simplistic. Local MDT plans are in development to systematically reduce reliance on this type of restrictive practice.

Epilepsy is one of the most common neurologic conditions. Its clinical manifestations are not restricted to seizures but often include cognitive disturbances and psychiatric disorders. Prospective population-based studies have shown that people with epilepsy have an increased risk of developing mood disorders, and people with a primary mood disorder have an increased risk of developing epilepsy. The existence of common pathogenic mechanisms in epilepsy and mood disorders may explain the bidirectional relation between these two conditions. Recognition of a personal and family psychiatric history at the time of evaluation of people for a seizure disorder is critical in the selection of antiseizure medications: those with mood-stabilizing properties (e.g., lamotrigine, oxcarbazepine) should be favoured as a first option in those with a positive history while those with negative psychotropic properties (e.g., levetiracetam, topiramate) avoided. While mood disorders may be clinically identical in people with epilepsy, they often present with atypical manifestations that do not meet ICD or DSM diagnostic criteria. Failure to treat mood disorders in epilepsy may have a negative impact, increasing suicide risk and iatrogenic effects of antiseizure medications and worsening quality of life. Treating mood disorders in epilepsy is identical to those with primary mood disorders. Yet, there is a common misconception that antidepressants have proconvulsant properties. Most antidepressants are safe when prescribed at therapeutic doses. The incidence of seizures is lower in people randomized to antidepressants than placebo in multicenter randomized placebo-controlled trials of people treated for a primary mood disorder. Thus, there is no excuse not to prescribe antidepressant medications to people with epilepsy. [ABSTRACT FROM AUTHOR]

Background: The Draft Mental Health Bill proposes removal of both intellectual disability and autism from Section 3 of the Mental Health Act for England and Wales (MHA). This would lead to people with intellectual disability (PwID) and/or autism could not be detained beyond 28 days, in the absence of diagnosed co-occurring mental illness. Aim: To obtain views of psychiatrists working with PwID in England and Wales regarding the proposed MHA changes. This study focusses specifically on the impact on PwID. Methods: A cross-sectional online mixed methodology survey of Likert and free-text response questions was developed, to ascertain perceptions of proposed legislative changes to the MHA. A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey. Quantitative data was analysed using descriptive statistics, Mann-Whitney and Fisher's exact tests. Thematic analysis was conducted on free text responses. Results: A total of 82 psychiatrists (33%) from approximately 250 eligible completed the survey. Nearly two-thirds (64%) reported good awareness of the proposed changes, with over half (55%) reporting disagreement with the changes. Psychiatrists working in inpatient settings for PwID reported increased awareness of the changes, less agreement with the reforms, and increased expectations of the reforms having negative unintended consequences, compared to their peers working exclusively in the community. Consultants reported greater disagreement with the changes compared to their non-consultant peers. Qualitative analysis identified five main themes: impact on diagnosis and treatment, seeking alternative options, introducing inequities, resources, and meeting holistic care goals through the Care, Education and Treatment Reviews (CETR) process. Conclusion: Psychiatrists working with PwID report widespread disagreement with the proposed changes to the MHA for PwID, with greater levels of disagreement among those working in inpatient services. Caution with respect to the proposed changes, and monitoring of the impact of the changes if implemented, is advised. [ABSTRACT FROM AUTHOR]

Fragile X syndrome (FXS) is the most common inherited cause of Intellectual Disability. There is a broad phenotype that includes deficits in cognition and behavioral changes, alongside physical characteristics. Phenotype depends upon the level of mutation in the FMR1 (fragile X messenger ribonucleoprotein 1) gene. The molecular understanding of the impact of the FMR1 gene mutation provides an opportunity to target treatment not only at symptoms but also on a molecular level. We conducted a systematic review to provide an up-to-date narrative summary of the current evidence for pharmacological treatment in FXS. The review was restricted to randomized, blinded, placebo-controlled trials. The outcomes from these studies are discussed and the level of evidence assessed against validated criteria. The initial search identified 2377 articles, of which 16 were included in the final analysis. Based on this review to date there is limited data to support any specific pharmacological treatments, although the data for cannabinoids are encouraging in those with FXS and in future developments in gene therapy may provide the answer to the search for precision medicine. Treatment must be person-centered and consider the combination of medical, genetic, cognitive, and emotional challenges. [ABSTRACT FROM AUTHOR]

This article is an editorial discussing the potential benefits of mindfulness-based interventions (MBIs) in clinical settings for both patients and physicians. The authors highlight the diverse studies included in the research topic, which cover various aspects of mindfulness and compassion interventions. These studies explore the feasibility and effectiveness of MBIs in reducing burnout, improving work-life balance, enhancing resilience, and managing conditions such as low back pain and attention deficit hyperactivity disorder (ADHD). The authors emphasize the need for further research and support for mindfulness interventions in healthcare settings. [Extracted from the article]