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关键词： child   diabetes mellitus   nursing   parents   self care   transfer   type 1  

摘要： Aim To determine which factors other than child age play a role in the division and transfer of diabetes care responsibilities between parents and children with type 1 diabetes. Design Qualitative focus group study. Methods Across four sites in the Netherlands, 18 parents (13 mothers) of children (9-14 years) with type 1 diabetes participated in four focus groups in 2015-2016, as part of the research project 'Whose diabetes is it anyway?'. Qualitative content analysis and the constant comparison method were used to analyse the data. Results According to parents, the transfer process included both direct and indirect tasks, had different levels (remembering, deciding, performing), was at times a difficult and stressful process, and showed large variation between families. A large number of child, parent and context factors were identified that affected the division and transfer of diabetes care responsibilities according to parents. Both positive and negative consequences of the transfer process were described for parental and child health, behaviour and well-being. Parental final evaluations of the division and transfer of diabetes care responsibilities appeared to be dependent on parenting values. Conclusion How families divide and transfer diabetes care tasks appeared to be affected by a complex interplay of child, parent and context characteristics, which had an impact on several parent and child domains. Impact Parents struggle with the right timing of transfer, which calls for more support from diabetes nurses. The identified factors can be used as input for integrating a more family-based approach into current age-based guidelines, to improve regular care.

关键词： Paediatric drug development   Paediatric regulation   Food and Drug Administration (FDA)   European Medicines Agency (EMA)   Age-appropriate formulations  

摘要： The investment in the pharmaceutical development of medicines for paediatric use represents a minority when compared to that one made for adult population. Which reasons lie behind this status quo? Which policies have been implemented to reverse such asymmetry? Is there room to new regulatory initiatives? The creation of regulations establishing the obligation to conduct paediatric trials was deemed necessary as a means of producing products of proven quality, safety and efficacy and, in addition, to set forth financial incentives for the pharmaceutical industry reduce this delay. The first regulatory initiatives were carried out by the Food and Drug Administration (FDA) at the end of the 20th century. Later on, the European Medicines Agency (EMA) issued the Paediatric Regulation, which has boosted a closer collaboration between both regulatory agencies. Along with the implemented legislation, pharmaceutical dosage forms, more adapted to the paediatric population have emerged, increasing the availability of age-appropriate formulations. However, a case-by-case analysis is required to ensure the best therapeutic option for the specific child. This review aims at discussing the development of medicines for paediatric use from a regulatory perspective, comparing the policies adopted by the EMA and FDA, following an overview of the drivers, restraints, opportunities and challenges. (C) 2021 American Pharmacists Association (R). Published by Elsevier Inc. All rights reserved.

关键词： Congenital   Neurogenic bladder   Urinary tract infection   Cancer surveillance   Genitourinary reconstruction   Urinary diversion  

摘要： Background Caring for adults with prior paediatric genitourinary reconstruction remains a challenge for adult providers. Reconstructions typically have occurred decades before;surgical records are not always available and patients and families may be unable to convey procedures performed. Spina bifida (SB) patients are vulnerable to cognitive decline which may compound these challenges. Changes in patient body habitus and loss of function may contribute to problems with previous reconstructions. Methods This is a non-systematic review of the literature and represents expert opinion where data are non-existent. This review focuses on the evaluation and management of complications arising from genitourinary reconstruction in congenital neurogenic bladder patients. Results Common complications experienced by congenital neurogenic bladder patients include recurrent urinary tract infection, incontinence of catheterizable channel and urinary reservoir as well as malignancy as this population *** of renal function and prevention of urinary tract infection while optimizing continence are essential guiding principles in the care of these patients. Many of the recommendations, however, are gleaned from available data in the adult spinal cord patient (a more commonly studied population) or the paediatric urologic literature due to limited studies in adult management of such patients. Conclusion Close follow-up and vigilance is warranted to monitor for infectious, mechanical and malignant complications while optimizing preservation of the upper urinary tracts and patient quality of life.

关键词： Extracellular vesicles   Platelets   Acute lymphoblastic leukaemia   Venous thromboembolism  

摘要： In paediatric acute lymphoblastic leukaemia (ALL), focus has shifted towards preventing treatment-related complications, including venous thromboembolism, the cause of significant mortality and morbidity. To better understand thrombogenic mechanisms during induction treatment, we studied the number, origin and procoagulant activity of extracellular vesicles (EVs) and P-selectin level throughout the induction course in 24 paediatric patients. EVs were mainly of platelet origin. We observed a significant increase in EV number, in platelet EV number and P-selectin level throughout the induction course. There was a correlation between higher EV and platelet EV number, P-selectin level, higher platelet count and leucocyte count. We also observed a correlation between higher EV procoagulant activity and higher platelet count and leucocyte count and higher P-selectin level. Older age and T phenotype were associated with a higher EV procoagulant activity. Platelet EV generation may play a role in thrombogenic complications in ALL patients and could serve as a biomarker to identify patients with a high risk of thrombosis. As a marker of platelet activation, P-selectin may be another relevant marker with the advantage of being easier to analyse in clinical practice.

摘要： Genomic testing for a genetic diagnosis is becoming standard of care for many children, especially those with a syndromal intellectual disability. While previously this type of specialised testing was performed mainly by clinical genetics teams, it is increasingly being 'mainstreamed' into standard paediatric care. With the introduction of a new Medicare rebate for genomic testing in May 2020, this type of testing is now available for paediatricians to order, in consultation with clinical genetics. Children must be aged less than 10 years with facial dysmorphism and multiple congenital abnormalities or have global developmental delay or moderate to severe intellectual disability. This rebate should increase the likelihood of a genetic diagnosis, with accompanying benefits for patient management, reproductive planning and diagnostic certainty. Similar to the introduction of chromosomal microarray into mainstream paediatrics, this genomic testing will increase the number of genetic diagnoses, however, will also yield more variants of uncertain significance, incidental findings, and negative results. This paper aims to guide paediatricians through the process of genomic testing, and represents the combined expertise of educators, clinical geneticists, paediatricians and genomic pathologists around Australia. Its purpose is to help paediatricians navigate choosing the right genomic test, consenting patients and understanding the possible outcomes of testing.

关键词： Infliximab   Anti-infliximab antibodies   Inflammatory bowel disease   Immunomonitoring   Paediatric therapeutics  

摘要： Many clinical studies in paediatric inflammatory bowel diseases (IBD) use infliximab trough level (IFX-TL) and detection of antibody against infliximab (ATI). Hence, comparison of commercially available assays is needed in paediatric samples to assess their reliability and their comparability. We measured IFX-TL and ATI-TL in sera samples of 53 IBD children using three ELISA kits: Lisa-Tracker? Duo Infliximab (Theradiag?), Ridascreen? IFX monitoring (R-Biopharm?) and Promonitor? IFX (Grifols?). Regarding IFX-TL, median values were comparable (p 0.05), a good statistical correlation has been observed (0.73 < R2 < 0.85) between tested assays and the Bland-Altman analysis found an excellent agreement with a bias estimated between -0.56 and 0.12 and few values outside the 95% limits of agreement. However, qualitative comparison with therapeutic interval classifications showed some discrepancies (30.2%), mainly due to values near thresholds and more often than not with Theradiag? (22.6%). For ATI, because of non-standardized units, the qualitative comparison found a sensibly good agreement (98.1%). These data show a good agreement of IFX-TL and ATI measurement between three marketed ELISA assays with a small bias obtained. Variations in some results can lead to divergent therapeutic interval classifications and prompt us to be cautious in the interpretation of values near therapeutic thresholds.

关键词： COVID-19   SARS-CoV-2   Seroprevalence   Healthcare workers   Hospital workers  

摘要： Background: Healthcare workers (HCWs) have been disproportionately affected by coronavirus disease 2019 (COVID-19), which may be driven, in part, by nosocomial exposure. If HCW exposure is predominantly nosocomial, HCWs in paediatric facilities, where few patients are admitted with COVID-19, may lack antibodies to severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) and be at increased risk during the current resurgence. Aim: To compare the seroprevalence of SARS-CoV-2 amongst HCWs in paediatric facilities in seven European countries and South Africa (N1/48). Methods: All categories of paediatric HCWs were invited to participate in the study, irrespective of previous symptoms. A single blood sample was taken and data about previous symptoms were documented. Serum was shipped to a central laboratory in London where SARS-CoV-2 immunoglobulin G was measured. Findings: In total, 4114 HCWs were recruited between 1st May and mid-July 2020. The range of seroprevalence was 0-16.93%. The highest seroprevalence was found in London (16.93%), followed by Cape Town, South Africa (10.36%). There were no positive HCWs in the Austrian, Estonian and Latvian cohorts;2/300 [0.66%, 95% confidence interval (CI) 0.18-2.4] HCWs tested positive in Lithuania;1/124 (0.81%, 95% CI 0.14-4.3) HCWs tested positive in Romania;and 1/76 (1.3%, 95% CI 0.23-7.0) HCWs tested positive in Greece. Conclusion: Overall seroprevalence amongst paediatric HCWs is similar to their national populations and linked to the national COVID-19 burden. Staff working in paediatric facilities in low-burden countries have very low seroprevalence rates and thus are likely to be susceptible to COVID-19. Their susceptibility to infection may affect their ability to provide care in the face of increasing cases of COVID-19, and this highlights the need for appropriate preventative strategies in paediatric healthcare settings. (C) 2021 The Author(s). Published by Elsevier Ltd on behalf of The Healthcare Infection Socie

关键词： international   paratesticular   pediatric   rhabdomyosarcoma  

摘要： The treatment of paratesticular rhabdomyosarcoma (PT-RMS) has varied over time and by cooperative group. The International Soft Tissue Sarcoma Database Consortium (INSTRuCT) is a collaboration of the Children's Oncology Group (COG) Soft Tissue Sarcoma Committee, European pediatric Soft tissue sarcoma Study Group (EpSSG), and the Cooperative Weichteilsarkom Studiengruppe (CWS). The INSTRuCT surgical committee has been given charge of the development of internationally applicable consensus guidelines for the surgical treatment of rhabdomyosarcoma. This clinical consensus opinion document addresses accepted principles and areas of controversy, such as scrotal violation and retroperitoneal nodal evaluation, providing an evidence-based guideline for the surgical treatment for PT-RMS.

摘要： Background The 2020 novel coronavirus (SARS-Cov-2) pandemic necessitates tailored recommendations addressing specific procedures for neonatal and paediatric transport of suspected or positive COVID-19 patients. The aim of this consensus statement is to define guidelines for safe clinical care for children needing inter-facility transport while making sure that the clinical teams involved are sufficiently protected from SARS-CoV-2. Methods A taskforce, composed of members of the European Society of Paediatric and Neonatal Intensive Care (ESPNIC) Transport section and the European Society for Paediatric Research (ESPR), reviewed the published literature and used a rapid, two-step modified Delphi process to formulate recommendations regarding safety and clinical management during transport of COVID-19 patients. Results The joint taskforce consisted of a panel of 12 experts who reached an agreement on a set of 17 recommendations specifying pertinent aspects on neonatal and paediatric COVID-19 patient transport. These included: case definition, personal protective equipment, airway management, equipment and strategies for invasive and non-invasive ventilation, special considerations for incubator and open stretcher transports, parents on transport and decontamination of transport vehicles. Conclusions Our consensus recommendations aim to define current best-practice and should help guide transport teams dealing with infants and children with COVID-19 to work safely and effectively. Impact We present European consensus recommendations on pertinent measures for transporting infants and children in times of the coronavirus (SARS-Cov-2 /COVID-19) pandemic. A panel of experts reviewed the evidence around transporting infants and children with proven or suspected COVID-19. Specific guidance on aspects of personal protective equipment, airway management and considerations for incubator and open stretcher transports is presented. Based on scant evidence, best-practice recommenda

关键词： Ureteropelvic junction obstruction (UPJO)   Laparo-scopic pyeloplasty   Ureteral stent   Cost analysis  

摘要： Background The gold standard treatment for Uretero-Pelvic Junction Obstruction (UPJO) is laparoscopic dismembered pyeloplasty according to the Anderson-Hynes technique. The internal Double-J ureteral (DJ) and the Externalized PyeloUreteral (EPU) stents are usually the drainage of choice. Only a few articles have compared the clinical impact of the different drainage techniques on the perioperative morbidity and none presented a cost analysis of the incurred hospital stay. Objective To present the clinical outcome and financial analysis of a cohort of children who underwent a laparoscopic pyeloplasty comparing the use of the DJ versus EPU stent. Study design Retrospective study of consecutives children who underwent laparoscopic Anderson-Hynes pyeloplasty in a single tertiary paediatric referral centre from January 2017 to March 2020. Patients were grouped according to the type of stent used: DJ stent vs EPU stent. Results Fifty-three laparoscopic pyeloplasties were performed on 51 patients: 27 (50.9%) had an EPU stent and 26 (49.1%) a DJ stent. There was no statistically significant difference between the two patient groups with regards to surgical time, hospital stay, stent-related complications or the need for re-do surgery. All the EPU stents were removed with an outpatient admission 8.1 days +/- 3.1 after surgery while the DJ stents were removed with a cystoscopy 61.6 days +/- 30.2 after surgery (p value < 0.001). On a financial analysis (Figure), the hospital costs for stent removal were significantly lower for the EPU stent group ( pound 686.7 +/- 263.4 vs pound 1425 +/- 299.5, p value < 0.01). Discussion Both drainage methods have some disadvantages. Possible complications associated with DJ stents include migration and artificial vesicoureteral reflux which may lead to higher incidence of Urinary Tract Infections. Possible disadvantages of the EPU stent insertion are related to the damage of the renal parenchyma and to the risk of developing skin site infect