272 research outputs found

    Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic

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    BACKGROUND: The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers. AIMS: To provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic. METHOD: Senior representatives of major UK-based professional and service-user representative organisations with a stake in the care of people with intellectual disabilities and/or autism were contacted to provide a list of concerns across three domains: 'mental health and challenging behaviour', 'physical health and epilepsy' and 'social circumstances and support'. The feedback was developed into statements on frequently reported priorities. These statements were then rated independently by expert clinicians. A video-conference meeting to reconcile outliers and to generate a consensus statement list was held. RESULTS: Thirty-two organisations were contacted, of which 26 (81%) replied. From the respondent's data, 30 draft consensus statements were generated. Following expert clinician review, there was initially strong consensus for seven statements (23%), increasing to 27 statements (90%) following video conferencing. CONCLUSIONS: These recommendations highlight the expectations of people with intellectual disabilities and/or autism in the current pandemic. This could support policymakers and professionals' deliver and evidence person-centred care

    Patterns of comorbidity and psychopharmacology in adults with intellectual disability and attention deficit hyperactivity disorder: an UK national cross-sectional audit.

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    Background: Attention-deficit hyperactivity disorder (ADHD) is higher in people with intellectual disability (ID) compared to the general population. Available limited evidence suggests this population has increased psychological problems, diagnostic overshadowing and psychotropic prescribing. This audit Identifies and analyzes real-world characteristics, diagnostic practices, treatment, and management of ADHD in adults with ID.Research Design and Methods: Pooled retrospective case note data for people with ID and ADHD, collected from 30 organizations across the UK, were analyzed. Patients were classified into mild and moderate-profound ID groups. Associated mental health and neurodevelopmental co-morbidity, Demographics, concomitant psychotropics, and mental and behavioral concerns were collected. Group differences were reported using logistic regression models.Results: Of 445 participants, 73% had co-occurring autism spectrum disorder (ASD) and 65% were prescribed ADHD medications. Those on ADHD medication were less likely to be prescribed antipsychotics (p < 0.001) and antidepressants (p < 0.001). Multiple significant differences were found in ADHD medication response between ID groups and those with/without co-morbid ASD but not associated with challenging behavior reduction.Conclusions: High levels of neurodevelopmental and psychiatric comorbidity were found. ID severity and the presence of ASD appear to influence the use of certain psychotropic medications. Appropriate use of ADHD medication appears to reduce psychotropic polypharmacy

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

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    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

    CellProfiler plugins -- an easy image analysis platform integration for containers and Python tools

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    CellProfiler is a widely used software for creating reproducible, reusable image analysis workflows without needing to code. In addition to the >90 modules that make up the main CellProfiler program, CellProfiler has a plugins system that allows for creation of new modules which integrate with other Python tools or tools that are packaged in software containers. The CellProfiler-plugins repository contains a number of these CellProfiler modules, especially modules that are experimental and/or dependency-heavy. Here, we present an upgraded CellProfiler-plugins repository with examples of accessing containerized tools, improved documentation, and added citation/reference tools to facilitate the use and contribution of the community.Comment: 17 pages, 2 figures, 1 tabl

    Awareness of social care needs in people with epilepsy and intellectual disability

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    Background: Nearly a quarter of people with intellectual disability (ID) have epilepsy with large numbers experiencing drug-resistant epilepsy, and premature mortality. To mitigate epilepsy risks the environment and social care needs, particularly in professional care settings, need to be met. Purpose: To compare professional care groups as regards their subjective confidence and perceived responsibility when managing the need of people with ID and epilepsy. Method: A multi-agency expert panel developed a questionnaire with embedded case vignettes with quantitative and qualitative elements to understand training and confidence in the health and social determinants of people with ID and epilepsy. The cross-sectional survey was disseminated amongst health and social care professionals working with people with ID in the UK using an exponential non-discriminative snow-balling methodology. Group comparisons were undertaken using suitable statistical tests including Fisher's exact, Kruskal-Wallis, and Mann-Whitney. Bonferroni correction was applied to significant (p < 0.05) results. Content analysis was conducted and relevant categories and themes were identified. Results: Social and health professionals (n = 54) rated their confidence to manage the needs of people with ID and epilepsy equally. Health professionals showed better awareness (p < 0.001) of the findings/recommendations of the latest evidence on premature deaths and identifying and managing epilepsy-related risks, including the relevance of nocturnal monitoring. The content analysis highlighted the need for clearer roles, improved care pathways, better epilepsy-specific knowledge, increased resources, and better multi-disciplinary work. Conclusions: A gap exists between health and social care professionals in awareness of epilepsy needs for people with ID, requiring essential training and national pathways

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

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    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 &lt; .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 &lt; .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. </jats:sec

    Full-term extrauterine abdominal pregnancy: a case report

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    <p>Abstract</p> <p>Introduction</p> <p>Extrauterine abdominal pregnancy is extremely rare and is frequently missed during antenatal care. This is a report of a full-term extrauterine abdominal pregnancy in a primigravida who likely had a ruptured ectopic pregnancy with secondary implantation and subsequently delivered a healthy baby.</p> <p>Case presentation</p> <p>A 23-year-old, Middle Eastern, primigravida presented at 14 weeks gestation with intermittent suprapubic pain and dysuria. An abdominal ultrasound examination showed a single viable fetus with free fluid in her abdomen. A follow-up examination at term showed a breech presentation and the possibility of a bicornute uterus with the fetus present in the left horn of her uterus. Our patient underwent Cesarean delivery under general anesthesia and was found to have a small intact uterus with the fetus lying in her abdomen and surrounded by an amniotic fluid-filled sac. The baby was extracted uneventfully, but the placenta was implanted in the left broad ligament and its removal resulted in massive intraoperative bleeding that necessitated blood and blood products transfusion and the administration of Factor VII to control the bleeding. Both the mother and newborn were discharged home in good condition.</p> <p>Conclusions</p> <p>An extrauterine abdominal pregnancy secondary to a ruptured ectopic pregnancy with secondary implantation could be missed during antenatal care and continue to term with good maternal and fetal outcome. An advanced extrauterine pregnancy should not result in the automatic termination of the pregnancy.</p
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