20 research outputs found

    Exploring factors related to delayed diagnosis for autistic girls through the Connected Bradford Cohort Database

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    Background: It is well established that autistic girls are diagnosed and supported later than boys, but a clear and grounded understanding of this problem is lacking. The Connected Bradford Cohort datasets combine health and education data for 600,000 citizens across the Bradford district, and therefore provide an excellent opportunity to document structural inequalities at a population level. Furthermore, using the Connecting Lived Experiences with Visualisation of Electronic Records (CLEVER) framework, the data findings can be combined with lived experiences in order to better our understanding and generate solutions to meet the needs of autistic girls earlier. The Early Years Foundation Stage Profile (EYFP) has been found to be an early predictor of autism diagnosis in children, but the impact of sex has not yet been investigated. Methods: Linked health and education datasets for 2617 autistic individuals (≤18 years) in the Connected Bradford cohort were used to ascertain the impact of sex on: rates of autism diagnosis, age and likelihood of diagnosis, and the EYFSP as a potential early indicator of autism. Interviews and focus were used to add vital insights into the data findings through the lived experiences of autistic girls/women and parents of autistic girls across the district. Results: Sex-based prevalence rates of autism were ̴ 4:1. Girls were diagnosed later than boys, and boys were three times more likely to receive an autism diagnosis. Low EYFSP scores were a strong indicator of subsequent autism diagnosis for boys, but comparatively less so for girls. Interview and focus group findings indicated that sex-based disparities were underpinned by factors such as a lack of professional knowledge about the Female Autism Phenotype and inflexible, under-resourced services. Conclusion: There is a systemic failure to identify and support autistic girls across the Bradford district. Health and education services are currently ill-equipped and require systemic training, service revision, and a focus on needs-led support

    A clinical and cost-effectiveness trial of a parent group intervention to manage challenging restricted and repetitive behaviours in young children with autism spectrum disorder: study protocol for a randomised controlled trial

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    Background Restricted and repetitive behaviours vary greatly across the autism spectrum, and although not all are problematic some can cause distress and interfere with learning and social opportunities. We have, alongside parents, developed a parent group based intervention for families of young children with autism, which aims to offer support to parents and carers; helping them to recognise, understand and learn how to respond to their child’s challenging restricted repetitive behaviours. Methods The study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Managing Repetitive Behaviours (MRB) parent group intervention versus a psychoeducation parent group Learning About Autism (LAA) (n = 250; 125 intervention/125 psychoeducation; ~ 83/site) for parents of young children aged 3–9 years 11 months with a diagnosis of autism. All analyses will be done under intention-to-treat principle. The primary outcome at 24 weeks will use generalised estimating equation (GEE) to compare proportion of children with improved RRB between the MRB group and the LAA group. The GEE model will account for the clustering of children by parent groups using exchangeable working correlation. All secondary outcomes will be analysed in a similar way using appropriate distribution and link function. The economic evaluation will be conducted from the perspective of both NHS costs and family access to local community services. A ‘within trial’ cost-effectiveness analysis with results reported as the incremental cost per additional child achieving at least the target improvement in CGI-I scale at 24 weeks. Discussion This is an efficacy trial to investigate the clinical and cost-effectiveness of a parent group based intervention designed to help parents understand and manage their child’s challenging RRB. If found to be effective, this intervention has the potential to improve the well-being of children and their families, reduce parental stress, greatly enhance community participation and potential for learning, and improve longer-term outcomes

    Investigation of hospital discharge cases and SARS-CoV-2 introduction into Lothian care homes

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    Background The first epidemic wave of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) in Scotland resulted in high case numbers and mortality in care homes. In Lothian, over one-third of care homes reported an outbreak, while there was limited testing of hospital patients discharged to care homes. Aim To investigate patients discharged from hospitals as a source of SARS-CoV-2 introduction into care homes during the first epidemic wave. Methods A clinical review was performed for all patients discharges from hospitals to care homes from 1st March 2020 to 31st May 2020. Episodes were ruled out based on coronavirus disease 2019 (COVID-19) test history, clinical assessment at discharge, whole-genome sequencing (WGS) data and an infectious period of 14 days. Clinical samples were processed for WGS, and consensus genomes generated were used for analysis using Cluster Investigation and Virus Epidemiological Tool software. Patient timelines were obtained using electronic hospital records. Findings In total, 787 patients discharged from hospitals to care homes were identified. Of these, 776 (99%) were ruled out for subsequent introduction of SARS-CoV-2 into care homes. However, for 10 episodes, the results were inconclusive as there was low genomic diversity in consensus genomes or no sequencing data were available. Only one discharge episode had a genomic, time and location link to positive cases during hospital admission, leading to 10 positive cases in their care home. Conclusion The majority of patients discharged from hospitals were ruled out for introduction of SARS-CoV-2 into care homes, highlighting the importance of screening all new admissions when faced with a novel emerging virus and no available vaccine

    SARS-CoV-2 Omicron is an immune escape variant with an altered cell entry pathway

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    Vaccines based on the spike protein of SARS-CoV-2 are a cornerstone of the public health response to COVID-19. The emergence of hypermutated, increasingly transmissible variants of concern (VOCs) threaten this strategy. Omicron (B.1.1.529), the fifth VOC to be described, harbours multiple amino acid mutations in spike, half of which lie within the receptor-binding domain. Here we demonstrate substantial evasion of neutralization by Omicron BA.1 and BA.2 variants in vitro using sera from individuals vaccinated with ChAdOx1, BNT162b2 and mRNA-1273. These data were mirrored by a substantial reduction in real-world vaccine effectiveness that was partially restored by booster vaccination. The Omicron variants BA.1 and BA.2 did not induce cell syncytia in vitro and favoured a TMPRSS2-independent endosomal entry pathway, these phenotypes mapping to distinct regions of the spike protein. Impaired cell fusion was determined by the receptor-binding domain, while endosomal entry mapped to the S2 domain. Such marked changes in antigenicity and replicative biology may underlie the rapid global spread and altered pathogenicity of the Omicron variant

    Caring for the critical illness survivor current practices and the role of the nurse in intensive care unit aftercare

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    The success of critical care medicine has historically been gauged by short-term mortality outcome. With technological advances, many patients now survive what were previously fatal critical illnesses, generating an expanding population of critical care survivors. Many survivors suffer with new or worsening impairments in physical, cognitive or mental health status arising after a critical illness and persisting beyond acute care hospitalization which has been termed Post Intensive Care Syndrome (PICS). This term can be applied to a survivor or a family member who often experiences significant social & psychiatric burdens caring for a survivor of critical illness. It is estimated that PICS develops in greater than 2.4 million Americans who survive critical illness each year, including approximately two-thirds of Medicare beneficiaries who survive critical illness. As a consequence of both an aging population and the dramatic improvement in mortality rates in those suffering from critical illness, PICS is rapidly becoming a major public health concern. For these survivors, new impairments after critical illness can have dramatic impacts on their quality of life or ability to be employed, and may persist for months or years after hospital discharge. This review of the will examine emerging practices in relation to ICU after care for both patients and caregivers, with specific emphasis on the critical role of the nurse

    Which Factors Influence Teacher Report of Adaptive Functioning in Autistic Children?

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    A wealth of parent-report research shows adaptive functioning difficulties in autistic children, with parent-report influenced by a number of child factors. Adaptive functioning in autistic children is known to vary across settings; however, no research has yet explored factors influencing education professional-report. This study investigated the rate and profile of impairment, and child factors influencing education professional-reported adaptive skills in 248 autistic children. Twelve children were < 3 years (min age for available normative data on the adaptive function measure), so were removed from the analyses. Results replicated parent-literature; adaptive skills were negatively associated with age and informant-reported autism severity, and positively associated with nonverbal ability and expressive language. Adaptive functioning is important for real-world outcomes, e.g. educational attainment, independence, and support needs. Improving our understanding of adaptive functioning in the education context may support opportunities for shared learning and enhance personalised support . SUPPLEMENTARY INFORMATION: The online version of this article (10.1007/s10803-021-04930-z) contains supplementary material, which is available to authorized users
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