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摘要： Informed consent for clinical trials is a thorny issue. A prospective observational study in 11 French oncology units assessed understanding of 37 children aged 9-17 years and 119 parents asked to consent to an early phase oncology trial.[1] Twenty-six children (70% of the total) aged 11-15 years participated. However, comprehension was considerably lower for the purpose of the clinical trial (12.6%; 2.7%), risks (44.5%; 10.8%), individual benefits of participation (33.6%; 10.8%) and alternatives to participation (47.5%; 27%). [Extracted from the article]

关键词： child health   literature review   paediatric services   patient and public engagement   scoping review  

摘要： Background Patient and public engagement in paediatric health-care decision making is under-researched, and there is a lack of systematically reviewed literature in this area. Objective To examine the extent, range and nature of published research investigating the engagement of children/youth, families and the public in paediatric service improvement, to summarize key aspects of the research identified and to identify gaps to help inform future research needs. Methods Literature was sought in MEDLINE, EMBASE, PsycINFO and CINAHL. Eligible articles presented research focused on patient, family and public engagement strategies in the paediatric health-care setting. Two reviewers extracted and charted data and analysed findings using a descriptive numerical summary analysis and a thematic analysis. Results From 4331 articles, 21 were eligible. Most were from the United States. The majority of studies were undertaken in hospital settings and used quantitative methods. Various patient and public engagement strategies/interventions were examined, including shared decision-making tools, questionnaires, youth councils/family advisory groups, patient portals and online networks. Most of the studies examined child/youth/parent satisfaction, with fewer investigating treatment outcomes or service improvement. The majority of studies investigated an engagement strategy at the 'individual treatment' level of engagement. Regarding the continuum of engagement, most of the studies were at either the 'consultation' or 'involvement' stage. Conclusion Future research needs to focus on the investigation of engagement strategies delivered in primary care, and the use of more qualitative and mixed methods approaches is recommended. There is a gap in the area of engagement strategies directed towards 'service design and resources' and 'macro/policy' levels.

关键词： Medication adherence   Airway clearance   Chronic suppurative lung disease  

摘要： Non-adherence to prescribed treatment is considered the foremost cause of treatment failure in chronic medical conditions. Airway clearance techniques (ACT) play a key role in the management of chronic suppurative lung disease yet, along with inhaled therapies such as nebulised antibiotics, adherence to these is often lower than to other treatments. In this review we discuss methods of monitoring adherence to these therapies and potential barriers and outline suggestions for improving adherence in the paediatric population. Crown Copyright (C) 2019 Published by Elsevier Ltd. All rights reserved.

摘要： Based on the theory of self-regulation and the polyvagal theory, we hypothesise a curvilinear relationship between self-regulation and autonomic responses. We report findings of a pilot study that provides support for the proposed hypothesis. For some of the observed cases, the quadratic polynomial regression models the data better than the linear regression model, indicating curvilinear relationships between self-regulation and indicators of autonomic response. Consequences of the hypothesis and its relevance for therapeutic interventions supporting the patients' self-calming system are discussed.

关键词： child nutrition disorder   eating behaviour   food habit   paediatric obesity   weight loss  

摘要： AimThis study investigates the prevalence of disturbed eating behaviours in children and adolescents initiating obesity treatment, and how the prevalence varies with age, sex and body mass index (BMI) standard deviation score (SDS). Secondly, it examines whether the presence of disturbed eating behaviours at enrolment is associated with the degree of weight loss after 12months of treatment. MethodsA total of 3621 patients aged 3-18years enrolled in a multidisciplinary obesity treatment programme were studied. Follow-up data after a median of 12.4 months were available for 2055 patients. Upon entry, patients were assessed for the following disturbed eating behaviours: meal skipping, emotional eating, overeating and rapid eating. Height and weight were measured at baseline and follow-up. ResultsAt enrolment, median age was 11.4years, median BMI SDS was 2.87, and 82.2% of patients exhibited one or more disturbed eating behaviours. The prevalence of meal skipping, emotional eating and rapid eating increased with age (P <0.01). Patients who reported overeating or rapid eating exhibited a 0.06-0.11 higher BMI SDS at enrolment than patients without these disturbed eating behaviours (P <0.02). After 1year of treatment, BMI SDS was reduced in 75.7% of patients, and the median reduction was 0.24 (95% confidence interval: 0.22-0.27). Overeating was associated with a higher degree of weight loss, while meal skipping, emotional eating and rapid eating did not associate with the degree of weight loss at follow-up. ConclusionsDisturbed eating behaviours were highly prevalent in children and adolescents with overweight or obesity, and varied with age and sex. After 1year of treatment, the degree of obesity improved, regardless of the presence of disturbed eating behaviours at treatment initiation.

关键词： Adult CHD   CHD   medical education   online learning  

摘要： Online learning has become an increasingly expected and popular component for education of the modern-day adult learner, including the medical provider. In light of the recent coronavirus pandemic, there has never been more urgency to establish opportunities for supplemental online learning. Heart University aims to be "the go-to online resource" for e-learning in CHD and paediatric-acquired heart disease. It is a carefully curated open access library of paedagogical material for all providers of care to children and adults with CHD or children with acquired heart disease, whether a trainee or a practising provider. In this manuscript, we review the aims, development, current offerings and standing, and future goals of Heart University.

关键词： Cardiology   bypass   kidney   biomarker  

摘要： Introduction: Children with CHD who undergo cardiopulmonary bypass are at an increased risk of acute kidney injury. This study evaluated the association of end-organ specific injury plasma biomarkers for brain: glial fibrillary acidic protein and heart: Galectin 3, soluble suppression of tumorgenicity 2, and N-terminal pro b-type natriuretic peptide with acute kidney injury in children undergoing cardiopulmonary bypass. Materials and Methods: We enrolled consecutive children undergoing cardiac surgery with cardiopulmonary bypass. Blood samples were collected pre-bypass in the operating room and in the immediate postoperative period. Acute kidney injury was defined as a rise of serum creatinine >= 50% from pre-operative baseline within 7 days after surgery. Results: Overall, 162 children (mean age 4.05 years, SD 5.28 years) were enrolled. Post-operative acute kidney injury developed in 55 (34%) children. Post-operative plasma glial fibrillary acidic protein levels were significantly higher in patients with acute kidney injury (median 0.154 (inter-quartile range 0.059-0.31) ng/ml) compared to those without acute kidney injury (median 0.056 (interquartile range 0.001-0.125) ng/ml) (p = 0.043). After adjustment for age, weight, and The Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery category, each natural log increase in post-operative glial fibrillary acidic protein was significantly associated with a higher risk for subsequent acute kidney injury (adjusted odds ratio glial fibrillary acidic protein 1.25;95% confidence interval 1.01-1.59). Pre/post-operative levels of galectin 3, soluble suppression of tumorgenicity 2, and N-terminal pro b-type natriuretic peptide did not significantly differ between patients with and without acute kidney injury. Conclusions: Higher plasma glial fibrillary acidic protein levels measured in the immediate post-operative period were independently associated with subsequent acute kidney injury in children afte

关键词： Acute lymphocytic leukaemia   Molecularly targeted therapy   Paediatric cancer   Randomized controlled trials   Targeted therapies  

关键词： Asthma   Bronchiectasis   Bronchiolitis   Cystic fibrosis   Interstitial lung disease   Preschool wheeze   Primary ciliary dyskinesia  

摘要： The first clinical indication of non-antibiotic benefits of macrolides was in the Far East, in adults with diffuse panbronchiolitis. This condition is characterised by chronic airway infection, often with Pseudomonas aeruginosa, airway inflammation, bronchiectasis and a high mortality. Low dose erythromycin, and subsequently other macrolides, led in many cases to complete remission of the condition, and abrogated the neutrophilic airway inflammation characteristic of the disease. This dramatic finding sparked a flurry of interest in the many hundreds of macrolides in nature, especially their anti-inflammatory and immunomodulatory effects. The biggest subsequent trials of azithromycin were in cystic fibrosis, which has obvious similarities to diffuse panbronchiolitis. There were unquestionable improvements in lung function and pulmonary exacerbations, but compared to diffuse panbronchiolitis, the results were disappointing. Case reports, case series and some randomised controlled trials followed in other conditions. Three trials of azithromycin in preschool wheeze gave contradictory results;a trial in pauciinflammatory adult asthma, and a trial in non-cystic fibrosis bronchiectasis both showed a significant reduction in exacerbations, but none matched the dramatic results in diffuse panbronchiolitis. There is clearly a huge risk of antibacterial resistance if macrolides are used widely and uncritically in the community. In summary, Azithromycin is not the answer to anything in paediatric respiratory medicine;the paediatric respiratory community needs to refocus on the dramatic benefits of macrolides in diffuse panbronchiolitis, use modern - omics technologies to determine the endotypes of inflammatory diseases and discover in nature or synthesise designer macrolides to replicate the diffuse panbronchiolitis results. We must now find out how to do better! (C) 2019 Elsevier Ltd. All rights reserved.

关键词： Paediatric care   Patient handover   Teamwork   Stress   Operating room   Intensive care unit  

摘要： Postsurgical handover of paediatric patients from operating rooms to intensive care units is a critical moment. This process is susceptible to errors and inefficiencies particularly if poor teamwork in this multidisciplinary and ad hoc collaboration occurs. Through combining provider- and observer-rated team performance, we aimed to determine agreement levels on team performance and associations with mental demands, disruptions, and stress. An observational and multisource study of provider and concomitant expert-observer ratings was established. In an Academic Paediatric Hospital, we conducted standardized observations of postsurgical handovers to PICU. We applied established observational and self-reported teamwork tools. Nested fixed and mixed models were established to estimate agreement within teams, between providers' and observer's ratings, as well as for estimations between team performance and mental demands, disruptions, and stress outcomes. Thirty-one postsurgical patient handovers were included with overall 109 ratings of involved providers. Provider-perceived team performance was rated high. Within the receiving sub-team, situation awareness was perceived lower compared to the handoff sub-team [F(df = 1) = 4.41, p = .04]. Inter-provider agreement on handover team performance was low for the overall team yet higher within handover sub-teams. We observed that high level of distractions during the handover was associated with inferior team performance rated by observers (B = - 0.72, 95% CI = - 1.44, - 0.01). Conclusion: We observed substantial disagreements on how involved professionals as well as observers rated teamwork during patient transfers. Investigations into paediatric teamwork and particular team-based handovers should carefully consider if concurrent provider and observer assessments are a valid and reliable way to evaluate teamwork in paediatric care. Common handover language should be established and mandatory before jointly evaluating this pr