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关键词： Paediatric   Transplantation   Solid organ transplantation   Surgical procedures   Haematopoietic stem cell transplantation   Post-transplant management   Quality of life  

摘要： The low prevalence of European paediatric transplanted patients and scarcity of resources and expertise led to the need for a multidisciplinary network able to improve the quality of life of paediatric patients and families requiring a solid organ or haematopoietic stem cell transplantation. The European Reference Network (ERN) TransplantChild is one of the 24 ERNs established in a European legal framework to improve the care of patients with rare diseases. ERN TransplantChild is the only ERN focused on both solid organ and haematopoietic stem cell paediatric transplantation, based on the understanding of paediatric transplantation as a complex and highly specialised process where specific complications appear regardless the organ involved, thus linking the skills and knowledge of different organ disciplines. Gathering European centres of expertise in paediatric transplantation will give access to a correct and timely diagnosis, share expertise and knowledge and collect a critical mass of patients and data that increases the speed and value of clinical research outcomes. Therefore, the ERN TransplantChild aims for a paediatric Pan-European, Pan-transplant approach.

关键词： Virtual reality   Social cognition training   Cerebellum   Paediatric patients   Rehabilitation   GRAIL  

摘要： Background Patients with cerebellar malformations exhibit not only movement problems, but also important deficits in social cognition. Thus, rehabilitation approaches should not only involve the recovery of motor function but also of higher-order abilities such as processing of social stimuli. In keeping with the general role of the cerebellum in anticipating and predicting events, we used a VR-based rehabilitation system to implement a social cognition intensive training specifically tailored to improve predictive abilities in social scenarios (VR-Spirit). Methods/design The study is an interventional randomised controlled trial that aims to recruit 42 children, adolescents and young adults with congenital cerebellar malformations, randomly allocated to the experimental group or the active control group. The experimental group is administered the VR-Spirit, requiring the participants to compete with different avatars in the reaching of recreational equipment and implicitly prompting them to form expectations about their playing preference. The active control group participates in a VR-training with standard games currently adopted for motor rehabilitation. Both trainings are composed by eight 45-min sessions and are administered in the GRAIL VR laboratory (Motekforce Link, Netherlands), an integrated platform that allows patients to move in natural and attractive VR environments. An evaluation session in VR with the same paradigm used in the VR-Spirit but implemented in a different scenario is administered at the beginning (T0) of the two trainings (T1) and at the end (T2). Moreover, a battery of neurocognitive tests spanning different domains is administered to all participants at T0, T2 and in a follow-up session after 2 months from the end of the two trainings (T3). Discussion This study offers a novel approach for rehabilitation based on specific neural mechanisms of the cerebellum. We aim to investigate the feasibility and efficacy of a new, intensive, social

关键词： Acute interstitial nephritis   Uveitis   Acute kidney injury   Paediatric  

摘要： Background Acute tubulointerstitial nephritis (AIN) is an uncommon cause of acute kidney injury in children, accounting for less than 10% of cases. There is limited information regarding the range of underlying diagnoses and how these may differ geographically. We undertook a retrospective case note review of consecutive cases of biopsy-proven AIN, presenting to a single UK tertiary paediatric centre, to describe the range of AIN in our caseload, define key characteristics and response to treatment, with the aim of informing paediatric nephrology practice. Methods Cases were identified retrospectively from departmental records. Data extracted included demographics, presenting clinical and biochemical features, renal biopsy histology, treatment and follow-up. Results Ten cases were identified over 8 years (2007-2014). Age range 6-16 years. Male:Female ratio 1:9. Final diagnoses included 6 tubulointerstitial nephritis and uveitis syndrome (TINU), 2 idiopathic, 1 sarcoidosis, 1 child with Streptococcal disease. Of the TINU cases, timing of eye symptoms varied in relation to AIN presentation. Cases had a varied investigative work-up. Median presenting plasma creatinine was 303 mu mol/l (range 152-932 mu mol/l). Renal function improved spontaneously in 1 idiopathic case and improved with antimicrobial treatment in a child with Streptococcal disease. Eight cases received immunosuppressive treatment with intravenous methylprednisolone (approximately 10 mg/kg for 3-5 days) and / or oral prednisolone (1-2 mg/kg initially, reducing over 7-28 days). At 1 month, median creatinine had fallen to 91 mu mol/l (range 41-120 mu mol/l) with median eGFR 61 ml/min/1.73m(2) (range 51-103 ml/min/1.73m(2)). At last follow-up (median 18.5 months, range 2-70 months), median creatinine was 71 mu mol/l (range 47-90 mu mol/l) with median eGFR 80 ml/min/1.73m(2), range 63 to 101 ml/min/1.73m(2)). Two patients received antihypertensives at diagnosis and 1 further patient at 1 month follow-up. Eig

关键词： Moral distress   Paediatric oncology   Healthcare professionals   Registered nurses   Medical doctors   Nursing assistants   Hospital settings  

摘要： Background The paediatric Moral Distress Scale-Revised (MDS-R) was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time for conversations with patients/families, 23) Parents' unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations in the Swedish paediatric MDS-R, among healthcare professionals (HCPs) in paediatric oncology. Methods In this national cross-sectional survey, the Swedish paediatric MDS-R, including five added items, were used. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for each item were calculated. Internal consistency was tested using Cronbach's alpha and inter-item correlation test. HCPs (n = 278) at all six Swedish paediatric oncology centres participated (> 89%). The Regional Ethical Review Board had no objections. Consent was assumed when the survey was returned. Results Nursing assistants (NAs) reported higher intensity and lower frequency on all added items;registered nurses (RNs) reported a higher frequency on item 22-25;medical doctors (MDs) reported higher MDS-R score on item 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high among all. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level of disturbance was low but it occurred often. The 26-item version showed good internal consistency for the overall sample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of the original 21. Conclusion In accordance with other studies, the intensity was higher than the frequency, however, the frequency of the added items was higher than of the or

摘要： Background Acute severe childhood asthma is an infrequent, but potentially life-threatening emergency condition. There is a wide range of different approaches to this condition, with very little supporting evidence, leading to significant variation in practice. To improve knowledge in this area, there must first be consensus on how to conduct clinical trials, so that valid comparisons can be made between future studies. We have formed an international working group comprising paediatricians and emergency physicians from North America, Europe, Asia, the Middle East, Africa, South America, Central America, Australasia and the United Kingdom. Methods/design A 5-stage approach will be used: (1) a comprehensive list of outcomes relevant to stakeholders will be compiled through systematic reviews and qualitative interviews with patients, families, and clinicians;(2) Delphi methodology will be applied to reduce the comprehensive list to a core outcome set;(3) we will review current clinical practice guidelines, existing clinical trials, and literature on bedside assessment of asthma severity. We will then identify practice differences in tne clinical assessment of asthma severity, and determine whether further prospective work is needed to achieve agreement on inclusion criteria for clinical trials in acute paediatric asthma in the emergency department (ED) setting;(4) a retrospective chart review in Australia and New Zealand will identify the incidence of serious clinical complications such as intubation, ICU admission, and death in children hospitalized with acute severe asthma. Understanding the incidence of such outcomes will allow us to understand how common (and therefore how feasible) particular outcomes are in asthma in the ED setting;and finally (5) a meeting of the Pediatric Emergency Research Networks (PERN) asthma working group will be held, with invitation of other clinicians interested in acute asthma research, and patients/families. The group will be asked t

关键词： Asthma   Paediatrics   LAMA   LABA   LTRA  

摘要： Diagnosing and treating asthma in paediatric patients remains challenging, with many children and adolescents remaining uncontrolled despite treatment. Selecting the most appropriate pharmacological treatment to add onto inhaled corticosteroids (ICS) in children and adolescents with asthma who remain symptomatic despite ICS can be difficult. This literature review compares the efficacy and safety of long-acting beta(2)-agonists (LABAs), leukotriene receptor antagonists (LTRAs) and long-acting muscarinic antagonists (LAMAs) as add-on treatment to ICS in children and adolescents aged 4-17 years. A literature search identified a total of 29 studies that met the inclusion criteria, including 21 randomised controlled trials (RCTs) of LABAs versus placebo, two RCTs of LAMAs (tiotropium) versus placebo, and four RCTs of LTRA (montelukast), all as add-on to ICS. In these studies, tiotropium and LABAs provided greater improvements in lung function than LTRAs, when compared with placebo as add-on to ICS. Although exacerbation data were difficult to interpret, tiotropium reduced the risk of exacerbations requiring oral corticosteroids when added to ICS, with or without additional controllers. LABAs and LTRAs had a comparable risk of asthma exacerbations with placebo when added to ICS. When adverse events (AEs) or serious AEs were analysed, LABAs, montelukast and tiotropium had a comparable safety profile with placebo. In conclusion, this literature review provides an up-to-date overview of the efficacy and safety of LABAs, LTRAs and LAMAs as add-on to ICS in children and adolescents with asthma. Overall, tiotropium and LABAs have similar efficacy, and provide greater improvements in lung function than montelukast as add-on to ICS. All three controller options have comparable safety profiles.

关键词： Pediatrics   Drug hypersensitivity reaction   Allergy tests   Epidemiology  

摘要： Background and objective Drug Hypersensitivity Reactions (DHRs) are considered adverse effects of medications that resemble allergy symptoms. The reported positive clinical history of pediatric drug reactions is about 10%, however, after allergy investigations, only a small percent is confirmed as hypersensitivity. The aim of this study was to analyze the clinical history, allergy work-up results and sensitization profile of children and adolescents referred to our Allergy Unit for suspected DHRs. Methods The study evaluated data related to a group of children with a positive history of drug reactions during a two-year period. The allergy work-up consisted of in vivo and in vitro tests, in accordance with the recommendations of the ENDA/EAACI guidelines. Results Data from a group of 637 patients [348 M (54.6%);289 F (45.4%)] were retrospectively analyzed. Beta lactams (BLs) were the most common drugs involved in the reported clinical history, followed by non-steroidal anti-inflammatory drugs (NSAIDs). Severe cutaneous adverse reactions (SCARs) were most frequently observed during BL treatment. The confirmation of BL hypersensitivity was higher for immediate reactions (IRs) [9.4%;5.1% through positive skin tests (STs) and 5.5% through drug provocation test (DPT)] compared to non-immediate reactions (non-IRs) (8.1%;2.2% through STs and 6.2% through DPT). A higher number of positive results was obtained for BLs and macrolides when the tests were performed within 12 months after the index reaction (p < 0.05). During DPTs with amoxicillin-clavulanic acid, four hypersensitivity reactions (including one anaphylaxis) occurred despite negative STs. Conclusion Our data demonstrated that only 9.1% of patients resulted in being positive to allergy tests which is in line with the data in literature. An allergy work-up is mandatory for excluding suspected hypersensitivity.

关键词： Child   China   Conscious sedation   Deep sedation   Questionnaires   Surveys  

摘要： Background Moderate and deep sedation are well-established techniques in many developed countries, and several guidelines have been published. However, they have received attention in China only in recent years. The aim of this study is to investigate current paediatric sedation practices in tertiary children's hospitals and tertiary maternity and children hospitals in China. Methods All tertiary children's hospitals and tertiary maternity and children hospitals registered with the National Health Commission of the People's Republic of China were invited to participate in an electronic survey, which included information on the sedation caseload, facility availability, staff structure, clinical skill requirements for sedation providers, fasting guidelines, patient-monitoring practices, and choice of sedatives. Results Fifty-eight of the 63 hospitals that completed the survey (92.1%) provided moderate and deep sedation. Dedicated sedation rooms and post-sedation recovery rooms were found in 14 (24.1%) and 19 (32.8%) hospitals, respectively. Sedation for non-invasive procedures was primarily performed by anaesthesiologists (69.0%);however, 75.9% of the sedation providers had not received paediatric basic or advanced life-support training. Children were asked to fast from clear liquids for at least 2 h in 44.8% of hospitals and up to 6 h in 5.2% of hospitals;they were asked to fast from solid food/milk for at least 4 h in 27.6% of hospitals and more than 8 h in 1.7% of hospitals. The most commonly used sedative in all groups was chloral hydrate. For rescue, propofol was the most widely used sedative, particularly for children older than 4 years. Conclusions Moderate and deep sedation practices vary widely in tertiary children's hospitals and tertiary maternity and children hospitals in China. Optimised practices should be established to improve the quality of moderate and deep sedation.

关键词： 幼儿   学前教育   科学教育   科学游戏  

摘要： 幼儿的学前教育对幼儿的发展有着非常重要的作用,它是我国素质教育中不可缺少的一部分,现阶段我国幼儿学前教育正进行着非常重要的革新。在对幼儿开展科学教育时,教育部非常鼓励幼儿园实行科学游戏教育。本文主要对在开展幼儿学前教育的过程当中对科学游戏的应用进行了研究,并对这种教育方式对幼儿学前教育所产生的影响进行了分析。