Epilepsy professionals' views on sudden unexpected death in epilepsy counselling: A tale of two countries.

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.

The potential unintended consequences of Mental Health Act reforms in England and Wales on people with intellectual disability and/or autism.

The draft Mental Health Bill, which amends the Mental Health Act 1983 for England and Wales, proposes protections for people with intellectual disability and/or autism (ID/A) to prevent detention in hospital in the absence of mental illness. This editorial critically appraises the positive impact and unintended consequences of the proposed reforms for people with ID/A.

The Prevalence of Diabetes in Autistic Persons: A Systematic Review.

BACKGROUND: It has been proposed that autistic individuals are at an increased risk of type 1 and type 2 diabetes. Improved understanding of diabetes prevalence in autistic persons will help inform resource allocation for diabetes-related public health measures for this patient group. OBJECTIVE: To conduct a systematic review of published literature pertaining to type 1 and type 2 diabetes prevalence in autistic individuals, including comparison with their non-autistic peers. METHODS: Eligibility criteria included studies investigating the prevalence of diabetes in autistic individuals, as well as having been published in the English language. A systematic search of online databases (MEDLINE, PsycINFO, CINAHL, EMBASE and PubMed) was conducted on 4th April 2020. Additional approaches included the ancestry method, grey literature searches and expert consultation. Studies were qualitatively analysed with reporting quality appraised. RESULTS: 19 eligible studies were identified, 7 of which provided type-specific diabetes prevalence data. Of 15 studies that included a non-autistic control group, 9 reported a higher diabetes prevalence among autistic persons, with a statistically significant difference in 4 studies. Studies demonstrating a higher diabetes prevalence in autistic groups had higher average study population sizes and reporting quality ratings. CONCLUSION: It is uncertain whether diabetes is significantly more prevalent in autistic persons relative to their non-autistic peers, though larger studies suggest a trend in this direction. Nevertheless, diabetes is a significant public health issue for the autistic community, which may require a tailored approach for identification and management. Prospero database registration number: CRD42019122176.

The Prevalence of Autism Spectrum Disorders in Adult Psychiatric Inpatients: A Systematic Review.

BACKGROUND: Whilst the prevalence of autism spectrum disorders in adults within the community setting is well-established, less is known about the prevalence among adults based within a psychiatric inpatient setting. OBJECTIVE: To conduct a systematic literature review pertaining to the prevalence of autism spectrum disorders among the adult psychiatric inpatient population. METHOD: Eligibility criteria included: (a) investigation of the prevalence of autism spectrum disorders (b) adult psychiatric inpatient study population (c) published in English language. Electronic databases accessed included PubMed, Medline, CINAHL, PsycINFO and EMBASE. Additionally, the ancestry method was utilised for the references of eligible papers, as well as grey literature searches and consultation with experts in the field. RESULTS: From the search, 4 studies were identified which satisfied the inclusion criteria, conducted in a variety of inpatient psychiatric settings, including secure forensic and intellectual disability units and a state psychiatric hospital. There were significant differences in methodological approaches, including the screening tests, diagnostic instruments and diagnostic criteria utilised. Autism spectrum disorder prevalence estimates varied considerably, from 2.4-9.9%. CONCLUSION: From the limited research data currently available, it appears that the prevalence of autism spectrum disorders is increased in inpatient psychiatric settings relative to the general population. There is a need for further high quality research in this patient group, to add to this limited evidence base, as well as in developing effective strategies to identify patients with a high likelihood of autism spectrum disorders within this setting.

Editorial on common mental health disorders and cognitive decline in a longitudinal Down syndrome cohort.

This editorial discusses a study by Idris and colleagues, where the authors investigated the impact of common mental disorders (CMDs) among patients with Down syndrome, with respect to development of clinical features of Alzheimer's disease.

Sublime and extended reality experiences to enhance emotional wellbeing for autistic people: A state of the art review and narrative synthesis.

BACKGROUND: Sublime is a centuries old concept of emergent experience arising from immense and threatening awareness provoked by overwhelming fear and dread when faced with an incomprehensible situation as is common to autistic people. Extended Reality (XR) technologies have been used since the mid-1990s, in regulating emotions, behaviour and supporting social skill development for autistic people. AIMS: To understand utility of XR technologies in creating immersive experiences for autistic people to alleviate anxiety and the relationship to the sublime. METHOD: A State of the Art literature review and narrative synthesis was conducted. PubMed, CINAHL, EMBASE, Cochrane Library, Scopus, Web of Science were searched with terms Autism AND Technology. In addition, fields of digital technologies and wellbeing, digital art and mental health, generative arts and the sublime were explored through web searches of grey literature, conversations with digital designers and explorations of extended reality platforms. No time limits were placed. Searches were done in English. Papers were screened and shortlisted using the inclusion criteria applied by two reviewers. RESULTS: Fifty-eight papers/articles met the preliminary inclusion criteria for in-depth review of which 31 were found suitable for the narrative synthesis related to XR technologies and sublime experiences as related to autistic people. Narrative synthesis lent itself to four themes that is current utility of XR Technologies in autism, the impact of immersive experiences on Behavioural, phenomenological and biological markers of autistic people, the Benefits of increased sensory stimulation using XR on autism and an inquiry into the potential of the sublime for autism. CONCLUSIONS: Mixed reality environments that experiment with a broad range of XR technologies including incorporating notions of the sublime, might be beneficial in reducing emotional dysregulation and improving social development in autistic people especially if co-designed with them.

Characteristics and primary care experiences of people who self-report as autistic: a probability sample survey of adults registered with primary care services in England.

OBJECTIVES: Little is known about adults who self-report as autistic. This study aimed to profile the demographic characteristics, long-term health conditions and primary care experiences of adults who self-report as autistic (including those with and without a formal diagnosis). DESIGN/SETTING: A nationally representative cross-sectional survey of adults registered with National Health Service (NHS) General Practitioner (GP) surgeries in England. PARTICIPANTS: 623 157 survey respondents aged 16 and over, including 4481 who self-report as autistic. OUTCOMES: Weighted descriptive statistics, with 95% CIs. Logistic regression modelling adjusted for age, gender, ethnicity and area-level deprivation compared those who self-report as autistic with the rest of the population. RESULTS: A total of 4481 of the 623 157 survey participants included in the analysis self-reported autism, yielding a weighted proportion estimate of 1.41% (95% CI 1.35% to 1.46%). Adults self-reporting as autistic were more likely to be younger, male or non-binary, to identify as a gender different from their sex at birth, have a non-heterosexual sexual identity, be of white or mixed or multiple ethnic groups, non-religious, without caring responsibilities, unemployed, live in more deprived areas and not smoke. All chronic conditions covered were more prevalent among adults self-reporting as autistic, including learning disability, mental health conditions, neurological conditions, dementia, blindness or partial sight and deafness or hearing loss. Adults self-reporting as autistic were also less likely to report a positive experience of making an appointment (adjusted OR (aOR) 0.90, 95% CI 0.82 to 0.98) and navigating GP practice websites (aOR 0.78, 95% CI 0.70 to 0.87) and more likely to report seeking advice from a friend or family member prior to making an appointment (aOR 1.25, 95% CI 1.14 to 1.38) and having a preferred GP (aOR 2.25, 95% CI 2.06 to 2.46). They were less likely to report that their needs were met (aOR 0.73, 95% CI 0.65 to 0.83). CONCLUSIONS: Adults self-reporting as autistic have a distinctive sociodemographic profile and heightened rates of long-term conditions. They report challenges in both accessing primary care and having their needs met when they do. These findings should inform future care initiatives designed to meet the needs of this group.

The views of psychiatrists on proposed changes to the England and Wales Mental Health Act 1983 legislation for people with intellectual disability: A national study.

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.

Pharmacological management of fragile X syndrome: a systematic review and narrative summary of the current evidence.

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Primary care experiences of adults reporting learning disability: a probability sample survey.

Background Adults with learning disability face multiple adversities, but evidence on their needs and primary care experiences is limited. Aim To compare the characteristics and primary care experiences of adults reporting learning disability with those who did not. Design and setting An analysis of the 2022 General Practice Patient Survey, a national probability sample survey conducted in 2022 with people registered with NHS primary care in England. Method This analysis reports descriptive profiles, weighted and with 95% confidence intervals. Logistic regression models adjusting for gender, age, ethnicity, and area-level deprivation compared experiences of adults reporting learning disability with those who did not. Results Survey participants comprised 623,157 people aged 16 or older, including 6,711 reporting learning disability. Adults reporting learning disability were more likely to be male, younger, of mixed or multiple ethnicities, and live in more deprived areas. All chronic conditions included in the survey were more common in adults reporting learning disability, especially reported sensory, neurodevelopmental, neurological, and mental health conditions. Adults reporting learning disability were twice as likely to have a preferred GP, and less likely to find their practice's website easy to navigate. They were also less likely to have confidence and trust in their healthcare professional, or feel their needs were met. Conclusion Adults reporting a learning disability had a higher likelihood of chronic health conditions. Their reported experiences of primary care indicate that despite recent initiatives to improve services offered, further adaptations to the consistency and ease of access to primary care is needed.

Acceptability of virtual psychiatric consultations for routine follow-ups post COVID-19 pandemic for people with intellectual disabilities: cross-sectional study.

BACKGROUND: After the rapid implementation of digital health services during the COVID-19 pandemic, a paucity of research exists about the suitability of remote consulting in people with intellectual disabilities and their carers, particularly for neuropsychiatric reviews. AIM: This study examines when remote neuropsychiatric routine consulting is suitable for this population. METHOD: A survey was conducted of people with intellectual disabilities and their carers, examining their preference between face-to-face and video consultations for ongoing neuropsychiatric reviews within a rural countywide intellectual disability service in Cornwall, England (population: 538 000). The survey was sent to all adults with intellectual disabilities open to the service on 30 July 2022, closing on 30 September 2022. Participants were asked to provide responses on 11 items predesigned and co-produced between clinicians and experts by experience. The entire service caseload of people had White ethnicity, reflecting the ethnic demographics of Cornwall. Responses received without consent were excluded from the study dataset. RESULTS: Of 271 eligible participants, 119 responses were received, 104 of whom consented to having their anonymised data used for research analysis. There were no significant differences between preferences and age and gender variables. There was no statistically significant difference regarding preference for the reintroduction of face-to-face appointments (52.0%) compared with video consultations (48.0%). Travel distance (>10 miles) to the clinical setting was important but did not outweigh benefits for those preferring a face-to-face appointment. CONCLUSIONS: This study offers insights into the factors that influence preferences about what type of neuropsychiatric appointment is most suitable for people with intellectual disabilities.

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.

Assessing for autism in adult psychiatry.

This editorial discusses a study by Nyrenius and colleagues in which they investigated rates of co-occurring psychiatric conditions and functioning in a population of adults referred to a Swedish psychiatric out-patient clinic, comparing those meeting DSM-5 diagnostic criteria for autism with their non-autistic peers.

A survey of the workplace experiences of police force employees who are autistic and/or have attention deficit hyperactivity disorder.

BACKGROUND: There has been little focus on autism and attention-deficit hyperactivity disorder (ADHD) in occupational groups, particularly in high-demand roles such as the police. AIMS: To describe the characteristics and experiences of UK-based police force employees who are autistic and/or have ADHD, including the benefits and challenges their conditions bring to their occupation, their need for reasonable adjustments, and their co-occurring mental illnesses. METHOD: An online survey was developed, containing both quantitative and qualitative elements. Survey invitations were disseminated through the National Police Autism Association. The survey was open from 23 April to 23 July 2022. RESULTS: A total of 117 participants participated in the survey, including 66 who were autistic and 51 with ADHD. Participants who were autistic and/or had ADHD widely reported both benefits and challenges related to their condition(s) in policing work. Both the autistic and ADHD groups widely reported having requested workplace adjustments related to their condition(s), although these were frequently not made. Anxiety (n = 57; 49%) and depression (n = 40; 36%) were both highly prevalent among the participants.The qualitative findings identified four themes: (a) motivations for taking on this career, (b) rewards of the role, (c) challenges of the job and (d) challenges regarding career progression. CONCLUSIONS: Police force employees who are autistic and/or have ADHD reported that their conditions provided both benefits and challenges with respect to policing work, and that they had requested related workplace adjustments, although such adjustments frequently do not take place. Healthcare professionals need to recognise the importance of workplace considerations and advocacy for people who are autistic and/or have ADHD.

Poo Matters! A scoping review of the impact of constipation on epilepsy.

BACKGROUND: Epilepsy is a common neurological disorder which frequently presents with co-morbid physical health conditions, including constipation. However, the nature of the relationship between the two conditions has not been well defined. AIM: To quantify constipation's relationship with epilepsy and anti-seizure medication (ASM). METHOD: A scoping review registered on PROSPERO (CRD42022320079) with suitable search terms was conducted and reported in accordance with PRISMA guidance. CINAHL, Embase, PsycInfo and MEDLINE electronic databases were searched by an information specialist. The Joanna Briggs Institute (JBI) critical appraisal tools alongside the Oxford Centre for Evidence Based Medicine (OCEBM) levels of evidence were used to assist in assessing relevance, quality, and results of the included publications. RESULTS: Nine articles selected for inclusion in the review. The prevalence of irritable bowel syndrome (including constipation) was reported to be up to five times more frequent in people with epilepsy (PWE). Functional constipation was reported in 36% of PWE. Constipation was found to be the second most common co-morbid condition in children with epilepsy. Two studies found constipation to precede seizures. Constipation was reported as a common side effect of ASMs in PWE. Two studies rated OCEBM level 2 the remaining level 3. CONCLUSION: Our findings suggest a higher prevalence of constipation in PWE. Co-occurring multimorbidity and resulting polypharmacy adds further complexity to the process of establishing aetiology of constipation in PWE. Potential contributory aetiological factors for constipation such as neurodevelopmental and genetic disorders, ASM side effects and the epilepsy itself require better understanding and research.

The long-term psycho-social impact of the pandemic on people with intellectual disability and their carers.

BACKGROUND: People with intellectual disabilities (PWID) are at six times higher risk of death due to COVID-19. To mitigate harm, as a high-risk group, significant social changes were imposed on PWID in the UK. Alongside these changes, the uncertainty of the pandemic influence, caused PWID and their carers to encounter significant stress. The evidence of the pandemic's psycho-social impact on PWID originates mainly from cross-sectional surveys conducted with professionals and carers. There is little research on the longitudinal psycho-social impact of the pandemic from PWID themselves. AIMS: To examine the long-term psycho-social impact of the pandemic on PWID. METHODS: A cross-sectional survey, following STROBE guidance, of 17 Likert scale statements (12 to PWID and 5 to their carers) to ascertain the pandemic's psychosocial impact was conducted. Every other PWID open to a specialist Intellectual Disability service serving half a UK County (pop:500,000) was selected. The same survey was re-run with the same cohort a year later. Descriptive statistics, Mann-Whitney, Chi-square and unpaired-t tests were used to compare responses. Significance is taken at p < .05. Comments were analysed using Clarke and Braun's approach. RESULTS: Of 250 PWID contacted, 100 (40%) responded in 2020 and 127 (51%) in 2021. 69% (2020) and 58% (2021) reported seeking medical support. Carers, (88%, 2020 and 90%, 2021) noticed emotional changes in PWID they cared for. 13% (2020) and 20% (2021) of PWID had their regular psychotropics increased. 21% (2020) and 24% (2021) had their pro re nata (PRN) medication adjusted. PWID or carers demonstrated no statistically significant variation in responses between themselves from 2020 to 2021. PWID were more likely to report being upset/distressed compared to their carers' perceptions of them in both years (p < .001). Four themes were identified. CONCLUSION: This longitudinal study highlights the diverse psycho-social impact of the pandemic on PWID in the UK. The Pandemic's psycho-social impact has been significantly underestimated.

Who cares? A scoping review on intellectual disability, epilepsy and social care.

PURPOSE: Nearly a quarter of people with Intellectual disability (PwID) have epilepsy. Many have seizures across their lifetime. In the UK supporting their epilepsy linked risks and needs, particularly in professional care settings and in the community, requires significant social care input. Therefore, the interface between social and health care services is important. This study aim is to identify key intersectional areas of social provision for PWID and epilepsy. METHODS: A scoping review of the literature was performed in accordance with PRISMA guidance with suitable search terms. The search was completed in CINAHL, Embase, Psych INFO, SCIE, and Cochrane electronic databases by an information specialist. A quality assessment was completed for the included studies where appropriate. The included studies were analysed qualitatively to identify key themes and provide a narrative description of the evidence by two reviewers. RESULTS: Of 748 papers screened, 94 were retrieved. Thirteen articles met the inclusion criteria with a range of methodologies. A thematic analysis generated four key categories for significant social care involvement i.e., staff training and education; emergency seizure management; holistic approach to care; and nocturnal monitoring and supervision. CONCLUSIONS: PwID with epilepsy have support needs that require fulfilling by various aspects of special care provision, many within the social ambit. Inspite of evidence of these needs and recurrent calls to work jointly with social care providers this has not happened. There is limited research into social care role in epilepsy management in PwID which needs addressing.

The potential for medicinal cannabis to help manage challenging behaviour in people with intellectual disability: A perspective review.

BACKGROUND: Around 2% of the population have intellectual disabilities. Over one-third people with intellectual disabilities (PwID) present with 'challenging behaviour', which nosologically and diagnostically is an abstract concept. Challenging behaviour is influenced by a range of bio-psycho-social factors in a population, which is unable to suitably comprehend and/or communicate concerns. This predisposes to poor health and social outcomes. There is no evidence-based treatments for managing challenging behaviour. Cannabidiol (CBD) and tetrahydrocannabinol (THC) are being trialled for a range of disorders, which are over-represented in PwID and provoke challenging behaviours, such as severe epilepsy, spasticity, post-traumatic stress disorder, social phobia, pain, etc. METHODS: This perspective review explores the different conditions, which benefit from medicinal CBD/THC preparations, by analysing recent literature from neurobiological, pre-clinical and clinical studies related to the topic. The evidence is synthesised to build an argument of the therapeutic benefits and challenges of medicinal cannabis to manage severe challenging behaviour in PwID. RESULTS: There is developing evidence of medicinal CBD/THC improving psychiatric and behavioural presentations in general. In particular, there is emergent proof in certain key areas of influence of medicinal CBD/THC positively supporting challenging behaviour, for example in children with neurodevelopmental disorders. However, there are significant challenges in employing such treatments in vulnerable populations such as PwID. CONCLUSION: Further clinical research for the considered use of medicinal CBD/THC for challenging behaviour management in PwID is needed. Strong co-production with experts with lived experience is needed for further testing to be done in this exciting new area.

The psychological and social impact of the digital self-support system 'Brain in Hand' on autistic people: prospective cohort study in England and Wales.

BACKGROUND: 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.

A systematic review of in-patient psychiatric care for people with intellectual disabilities and/or autism: effectiveness, patient safety and experience.

BACKGROUND: An increasing number of children, adolescents and adults with intellectual disabilities and/or autism are being admitted to general psychiatric wards and cared for by general psychiatrists. AIMS: The aim of this systematic review was to consider the likely effectiveness of in-patient treatment for this population, and compare and contrast differing models of in-patient care. METHOD: A systematic search was completed to identify papers where authors had reported data about the effectiveness of in-patient admissions with reference to one of three domains: treatment effect (e.g. length of stay, clinical outcome, readmission), patient safety (e.g. restrictive practices) and patient experience (e.g. patient or family satisfaction). Where possible, outcomes associated with admission were considered further within the context of differing models of in-patient care (e.g. specialist in-patient services versus general mental health in-patient services). RESULTS: A total of 106 studies were included and there was evidence that improvements in mental health, social functioning, behaviour and forensic risk were associated with in-patient admission. There were two main models of in-patient psychiatric care described within the literature: admission to a specialist intellectual disability or general mental health in-patient service. Patients admitted to specialist intellectual disability in-patient services had greater complexity, but there were additional benefits, including fewer out-of-area discharges and lower seclusion rates. CONCLUSIONS: There was evidence that admission to in-patient services was associated with improvements in mental health for this population. There was some evidence indicating better outcomes for those admitted to specialist services.