15 research outputs found

    Pathways to care for critically ill or injured children: A cohort study from first presentation to healthcare services through to admission to intensive care or death

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    Purpose Critically ill or injured children require prompt identification, rapid referral and quality emergency management. We undertook a study to evaluate the care pathway of critically ill or injured children to identify preventable failures in the care provided. METHODS: A year-long cohort study of critically ill and injured children was performed in Cape Town, South Africa, from first presentation to healthcare services until paediatric intensive care unit (PICU) admission or emergency department death, using expert panel review of medical records and caregiver interview. Main outcomes were expert assessment of overall quality of care; avoidability of severity of illness and PICU admission or death and the identification of modifiable factors. RESULTS: The study enrolled 282 children, 252 emergency PICU admissions, and 30 deaths. Global quality of care was graded good in 10% of cases, with half having at least one major impact modifiable factor. Key modifiable factors related to access to care and identification of the critically ill, assessment of severity, inadequate resuscitation, and delays in decision making and referral. Children were transferred with median time from first presentation to PICU admission of 12.3 hours. There was potentially avoidable severity of illness in 185 (74%) of children, and death prior to PICU admission was avoidable in 17/30 (56.7%) of children. CONCLUSIONS: The study presents a novel methodology, examining quality of care across an entire system, and highlighting the complexity of the pathway and the modifiable events amenable to interventions, that could reduce mortality and morbidity, and optimize utilization of scarce critical care resources; as well as demonstrating the importance of continuity and quality of care

    Lessons for Flying Astronauts with Disabilities Drawn from Experience in Aviation

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    INTRODUCTION: A ccessible spaceflight may seem a distant concept. As part of a diverse European Space Agency funded Topical Team, we are working on the physiological feasibility of space missions being undertaken by people with physical disabilities. Here, the first activity of this team is presented in the form of key lessons learned from aviation to inform new work on space missions. DISCUSSION: The first lesson is agreeing on realistic expectations about impairments, their severity, and the possibility of flying independently. This is important in terms of astronaut recruitment and societal expectations. The second lesson relates to training and adjustments for people with disabilities. Flexibility is important while maintaining safety for everyone involved. The third lesson is about managing unconscious bias from the different stakeholders. We conclude by arguing that engagement with people from different backgrounds is essential for the success of the first space mission with people with physical disabilities.</p

    Development and validation of a comprehensive genomic diagnostic tool for myeloid malignancies.

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    The diagnosis of hematologic malignancies relies on multidisciplinary workflows involving morphology, flow cytometry, cytogenetic, and molecular genetic analyses. Advances in cancer genomics have identified numerous recurrent mutations with clear prognostic and/or therapeutic significance to different cancers. In myeloid malignancies, there is a clinical imperative to test for such mutations in mainstream diagnosis; however, progress toward this has been slow and piecemeal. Here we describe Karyogene, an integrated targeted resequencing/analytical platform that detects nucleotide substitutions, insertions/deletions, chromosomal translocations, copy number abnormalities, and zygosity changes in a single assay. We validate the approach against 62 acute myeloid leukemia, 50 myelodysplastic syndrome, and 40 blood DNA samples from individuals without evidence of clonal blood disorders. We demonstrate robust detection of sequence changes in 49 genes, including difficult-to-detect mutations such as FLT3 internal-tandem and mixed-lineage leukemia (MLL) partial-tandem duplications, and clinically significant chromosomal rearrangements including MLL translocations to known and unknown partners, identifying the novel fusion gene MLL-DIAPH2 in the process. Additionally, we identify most significant chromosomal gains and losses, and several copy neutral loss-of-heterozygosity mutations at a genome-wide level, including previously unreported changes such as homozygosity for DNMT3A R882 mutations. Karyogene represents a dependable genomic diagnosis platform for translational research and for the clinical management of myeloid malignancies, which can be readily adapted for use in other cancers

    Leukemia-associated somatic mutations drive distinct patterns of age-related clonal hemopoiesis.

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    Clonal hemopoiesis driven by leukemia-associated gene mutations can occur without evidence of a blood disorder. To investigate this phenomenon, we interrogated 15 mutation hot spots in blood DNA from 4,219 individuals using ultra-deep sequencing. Using only the hot spots studied, we identified clonal hemopoiesis in 0.8% of individuals under 60, rising to 19.5% of those ≥90 years, thus predicting that clonal hemopoiesis is much more prevalent than previously realized. DNMT3A-R882 mutations were most common and, although their prevalence increased with age, were found in individuals as young as 25 years. By contrast, mutations affecting spliceosome genes SF3B1 and SRSF2, closely associated with the myelodysplastic syndromes, were identified only in those aged >70 years, with several individuals harboring more than one such mutation. This indicates that spliceosome gene mutations drive clonal expansion under selection pressures particular to the aging hemopoietic system and explains the high incidence of clonal disorders associated with these mutations in advanced old age

    A randomised controlled pilot and feasibility study of music therapy for improving the quality of life of hospice inpatients.

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    BACKGROUND: Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias. METHODS: This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12 months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool. The design was a single-centre, researcher-blinded randomised pilot and feasibility study involving two parallel groups. Participants were recruited from one inpatient hospice unit in Northern Ireland. Eligibility criteria were an Eastern Cooperative Oncology Group performance status of two or lower and an Abbreviated Mental Test score of seven or more. Consenting patients were randomly allocated to the intervention or control group using a 1:1 allocation ratio. The intervention group received up to six individual music therapy sessions over 3 weeks in addition to usual care. The control group received usual care only. RESULTS: Fifty one participants were recruited over 12 months. Twenty five were allocated to the intervention group and 26 to the control group. Seventy one percent of participants were lost to follow up by week 3, the proposed primary endpoint. The primary endpoint was moved from week 3, when 71% were lost to follow up to week 1, when 33% were lost. The McGill Quality of Life questionnaire was generally acceptable to participants. In order to detect a small to moderate effect size of 0.3, a fully powered study would require the recruitment of 698 participants. CONCLUSIONS: A Phase III randomised controlled trial to evaluate the effectiveness of music therapy in improving the quality of life of hospice inpatients is feasible. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02791048 . Registered 6 June 2016

    Global emergency care clinical practice guidelines: A landscape analysis

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    Introduction: An adaptive guideline development method, as opposed to a de novo guideline development, is dependent on access to existing high-quality up-to-date clinical practice guidelines (CPGs). We described the characteristics and quality of CPGs relevant to prehospital care worldwide, in order to strengthen guideline development in low-resource settings for emergency care. Methods: We conducted a descriptive study of a database of international CPGs relevant to emergency care produced by the African Federation for Emergency Medicine (AFEM) CPG project in 2016. Guideline quality was assessed with the AGREE II tool, independently and in duplicate. End-user documents such as protocols, care pathways, and algorithms were excluded. Data were imported, managed, and analysed in STATA 14 and R. Results: In total, 276 guidelines were included. Less than 2% of CPGs originated from low- and middle income-countries (LMICs); only 15% (n = 38) of guidelines were prehospital specific, and there were no CPGs directly applicable to prehospital care in LMICs. Most guidelines used de novo methods (58%, n = 150) and were produced by professional societies or associations (63%, n = 164), with the minority developed by international bodies (3%, n = 7). National bodies, such as the National Institute for Health and Care Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN), produced higher quality guidelines when compared to international guidelines, professional societies, and clinician/academic-produced guidelines. Guideline quality varied across topics, subpopulations and producers. Resource-constrained guideline developers that cannot afford de novo guideline development have access to an expanding pool of high-quality prehospital guidelines to translate to their local setting. Discussion: Although some high-quality CPGs exist relevant to emergency care, none directly address the needs of prehospital care in LMICs, especially in Africa. Strengthening guideline development capacity, including adaptive guideline development methods that use existing high-quality CPGs, is a priority. Keywords: Emergency care, Prehospital, Guideline development, Scoping, Guideline qualit

    Learning cultures in further education

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    This paper examines the nature of learning cultures in English Further Education (FE), as revealed in the Transforming Learning Cultures in FE (TLC) research project. In it, we describe four characteristics of a generic FE learning culture: the significance of learning cultures in every site; the significance of the tutor in influencing site learning cultures; the often negative impact of policy and management approaches; and the ever-present issue of course status. We go on to different types of learning cultures within FE related to the degrees of synergy and conflict between the multiple influences on learning in those sites. In general, sites with greater synergy have more effective learning, pointing to valuable new ways to further improve learning. However, such synergy is sometimes difficult to achieve, and brings further problems in its train. It is important to separate out judgments about learning effectiveness, from equally important ones about learning value. The conceptions of the latter varied from site to site, and were often contested
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