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Hepatobiliary Involvement of Kawasaki Disease Incidentally Revealed on the First Day of Illness: A Case Report. 川崎病发病第一天偶然发现肝胆受累1例报告。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2026-01-06 DOI: 10.1111/jpc.70284
Mimori Abe, Kazuki Iio, Hiroshi Sakakibara
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引用次数: 0
Gender, Feeding Practices and Hygiene Factors Linked to Early Stunting in Iringa, Tanzania: Paradox of Food Abundance. 性别、喂养方式和卫生因素与坦桑尼亚伊林加的早期发育迟缓有关:食物充裕的悖论。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2026-01-03 DOI: 10.1111/jpc.70283
Grantina Modern, Aneth David, Kilaza Samson Mwaikono, Beatus Lyimo, Sylvester Lyantagaye

Aim: Stunting, defined as low height-for-age, impairs growth, cognitive development and contributes to long-term poverty through poor school performance and health outcomes. In Tanzania, 28% of children under 5 are stunted, with Iringa Region showing the highest prevalence (57%). It is unclear why such high incidences occur despite the region being a leading food producer.

Methods: To explore underlying factors, a community-based cross-sectional survey was conducted in four districts of Iringa in September-October 2024, involving children under 2 years. Data were collected using household questionnaires covering feeding practices, water, sanitation and hygiene (WaSH), vaccination, illness and socio-demographic factors.

Results: The median age was 14 months and 205 (51%) were male. Overall, out of 397, 59% were stunted, though most had normal underweight (89%) and wasting status (97.5%). Additionally, 94% met minimum dietary diversity, confirming diet alone does not explain the high stunting rate. Bivariate analysis identified nine significant variables: gender, underweight status, toilet sharing, child hand wash before and after feeding, continued breastfeeding, measles vaccination, vitamin A supplementation and feeding diversity, of which five (5) remained significant in multivariate analysis. Multivariate analysis showed male children had 2.2 times higher odds of stunting; risk also increased among underweight children but was lower in those under 1 year. Continued breastfeeding after 6 months reduced odds of stunting by 61%. Children in households sharing toilets had almost half the odds.

Conclusion: Findings highlight the need to promote breastfeeding beyond 6 months, strengthen nutrition and WaSH programs and target interventions for male and underweight children.

目的:发育迟缓,定义为身高低于年龄,损害生长和认知发展,并通过学习成绩差和健康结果造成长期贫困。在坦桑尼亚,28%的5岁以下儿童发育迟缓,其中伊林加地区的患病率最高(57%)。尽管该地区是主要的食品生产国,但目前尚不清楚为什么会发生如此高的发病率。方法:于2024年9 - 10月在伊林加市4个区开展2岁以下儿童社区横断面调查,探讨影响因素。使用家庭调查问卷收集数据,内容包括喂养方式、水、环境卫生和个人卫生、疫苗接种、疾病和社会人口因素。结果:中位年龄为14个月,男性205例(51%)。总体而言,在3997名儿童中,59%发育迟缓,尽管大多数体重不足(89%)和消瘦(97.5%)。此外,94%的儿童达到了最低饮食多样性标准,这证实饮食本身并不能解释高发育迟缓率。双变量分析发现9个显著变量:性别、体重不足状况、共用厕所、喂养前后儿童洗手、继续母乳喂养、麻疹疫苗接种、维生素A补充和喂养多样性,其中5个变量在多变量分析中仍具有显著性。多变量分析显示,男孩发育迟缓的几率是男孩的2.2倍;体重过轻的儿童患病风险也有所增加,但一岁以下的儿童患病风险较低。6个月后继续母乳喂养使发育迟缓的几率降低了61%。共用厕所家庭的孩子几乎有一半的几率。结论:研究结果强调有必要促进6个月以上的母乳喂养,加强营养和讲卫生项目,并针对男性和体重过轻儿童采取有针对性的干预措施。
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引用次数: 0
Hammersmith Infant Neurological Examination at 3 Months in Infants at Risk for Congenital Infections: A Cohort Study. 有先天性感染风险的婴儿在3个月时进行Hammersmith婴儿神经学检查:一项队列研究。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-31 DOI: 10.1111/jpc.70273
Karen Cristine Oliveira de Azambuja, Amanda de Arguelho Oliveira Arguelho, Meyene Duque Weber, Lorrainy Marques da Silva Dutra, Tathiana Ghisi de Souza, Daniele Soares-Marangoni

Introduction: STORCH refers to a group of congenital infections (syphilis, toxoplasmosis, rubella, cytomegalovirus and herpes) that can impact the central nervous system. As clinical signs may not appear until several months or years after birth, the early detection of risk in STORCH-exposed infants has been challenging, and the use of sensitive tools in this population is understudied.

Objective: To compare STORCH-exposed infants with non-exposed controls using the Hammersmith Infant Neurological Examination (HINE) at 3 months of age.

Methods: This is an observational cohort study. A total of 60 infants were included and equally allocated into two groups: an exposed group, whose mothers had a clinically confirmed diagnosis of a classic STORCH infection during pregnancy, and a non-exposed control group, whose mothers did not present STORCH infections during gestation. At 3 months of age (13.83 ± 1.09 weeks post-term), infants were assessed using the HINE. Group comparisons were performed for the global score, subscores across the five scorable domains (cranial nerve function, posture, spontaneous movements, tone and reflexes and reactions), number of asymmetries and risk of cerebral palsy.

Results: The exposed group showed lower global scores and lower subscores in most HINE domains compared to controls, along with a higher frequency of asymmetries and an increased proportion of infants classified as at high risk for cerebral palsy.

Conclusion: Infants prenatally exposed to STORCH infections showed an increased risk of impairment based on the HINE when compared to controls. Potential neurological limitations were detectable in the exposed group at 3 months of age.

简介:STORCH是指一组可影响中枢神经系统的先天性感染(梅毒、弓形虫病、风疹、巨细胞病毒和疱疹)。由于临床症状可能在出生后几个月或几年才出现,因此早期发现暴露于storch的婴儿的风险一直具有挑战性,并且在这一人群中使用敏感工具的研究不足。目的:通过3个月大的哈默史密斯婴儿神经检查(HINE),比较storch暴露的婴儿与未暴露的对照组。方法:这是一个观察性队列研究。共有60名婴儿被平均分为两组:暴露组,其母亲在怀孕期间被临床确诊为典型的STORCH感染,而非暴露组,其母亲在怀孕期间没有出现STORCH感染。在3个月大时(足月后13.83±1.09周),使用HINE对婴儿进行评估。对整体得分、五个可评分领域(脑神经功能、姿势、自发运动、音调、反射和反应)的子得分、不对称的数量和脑瘫的风险进行组间比较。结果:与对照组相比,暴露组在大多数HINE域中显示出较低的整体得分和较低的子得分,同时不对称的频率更高,并且被归类为脑瘫高风险的婴儿比例增加。结论:与对照组相比,产前暴露于STORCH感染的婴儿显示出基于HINE的损伤风险增加。暴露组在3个月大时可检测到潜在的神经功能限制。
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引用次数: 0
Implementation of a Paediatric Virtual Emergency Department: A Descriptive Analysis. 儿科虚拟急诊科的实现:描述性分析。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-31 DOI: 10.1111/jpc.70277
Joanna Lawrence, James H Boyd, Vaughan Rosier, Jennie Hutton, Loren Sher, Adam I Semciw, Suzanne M Miller, Rebecca L Jessup, Jason Talevski

Objective: The Victorian Virtual Emergency Department (VVED) is a statewide virtual emergency service in Victoria, Australia providing real-time online audio-visual consultations for patients with non-life-threatening conditions. This study aims to explore the utilisation and impact of the paediatric arm of the VVED (VVED-Kids).

Study design: This was a retrospective analysis of routinely collected data from the VVED. Data was extracted from the VVED data warehouse on patients aged 0-17 years presenting to VVED-Kids during the initial two-year period of the dedicated paediatric department (March 2023-February 2025). Outcome variables included sociodemographic data, referral source, recommended disposition and diagnosis (ICD code). Descriptive statistics were used to report patient demographics and service-related characteristics of presentations.

Results: During the two-year period, there were 130 821 presentations to VVED-Kids. The median patient age was 3 years, 53.1% of presentations were in males, and 73% of presentations were from children living in metropolitan areas. The most common referral source was self-referral (64.1%), followed by Nurse-on-Call (20.0%) and paramedic consultations (6.5%). Over half of VVED-Kids presentations comprised viral infections, including fevers, gastroenteritis or respiratory illnesses. The majority of presentations were managed without requiring transfer to a physical ED (85.6%).

Conclusions: Based on discharge disposition, VVED-Kids appears to divert patients from attending physical EDs, preserving in-person care for higher acuity patients who need it most. Partnerships with key healthcare providers such as Nurse-on-Call and Ambulance Victoria can support more families in avoiding the physical ED and receiving care in their own homes.

目的:维多利亚州虚拟急诊科(VVED)是澳大利亚维多利亚州的一个全州范围的虚拟急诊服务,为非危及生命的患者提供实时在线视听咨询。本研究旨在探讨VVED (ved - kids)儿科部分的使用和影响。研究设计:这是一项对VVED常规收集数据的回顾性分析。数据是从VVED数据仓库中提取的,数据来自专门儿科最初两年(203月23日至2025年2月)期间0-17岁的ved - kids患者。结果变量包括社会人口统计数据、转诊来源、推荐处置和诊断(ICD代码)。描述性统计用于报告患者人口统计学和与服务相关的特征。结果:在两年的时间里,有130 821例ved - kids的报告。患者年龄中位数为3岁,53.1%的患者为男性,73%的患者为居住在大都市地区的儿童。最常见的转诊来源是自我转诊(64.1%),其次是随叫随到的护士(20.0%)和护理人员咨询(6.5%)。超过一半的ved - kids报告涉及病毒感染,包括发烧、肠胃炎或呼吸道疾病。大多数的表现不需要转移到物理ED(85.6%)。结论:基于出院处置,ved - kids似乎转移了患者去物理急诊科的时间,为最需要的高锐度患者保留了亲自护理。与关键的医疗保健提供者(如护士随叫随到和维多利亚救护车)合作,可以帮助更多的家庭避免去实体急诊室,在自己的家中接受护理。
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引用次数: 0
Tick-Bite Alopecia of the Scalp in a Child: Case Report and Differential Diagnosis With Alopecia Areata and SENLAT. 儿童头皮蜱咬性脱发:斑秃和SENLAT的病例报告和鉴别诊断。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-31 DOI: 10.1111/jpc.70282
Diego Abbenante, Davide Bertolla, Miriam Anna Carpanese, Alessandro Borghi, Michela Tabanelli, Michela Starace
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引用次数: 0
Prolonged Versus Intermittent Beta-Lactam Antibiotic Infusions in Paediatric Critical Care: A Systematic Review and Meta-Analysis. 长期与间歇性β -内酰胺抗生素输注在儿科重症监护:系统回顾和荟萃分析。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-27 DOI: 10.1111/jpc.70275
Kirsty O'Keefe, Kerina J Denny, Renate Le Marsney, James McCullough, Patricia Gilholm, Kinga A Budai, Agathe Béranger, Csaba Lódi, Mahmoud Obeidat, Gwendoline Ragonnet, Noppadol Wacharachaisurapol, Jason A Roberts, Kristen S Gibbons, Sainath Raman

Objective: In paediatric intensive care units (PICUs), beta-lactam antibiotic administration is often suboptimal, placing critically ill children at risk. We aimed to investigate the mortality, PICU length of stay, and pharmacokinetic/pharmacodynamic (PK/PD) benefits of prolonged beta-lactam infusions in PICU compared to intermittent infusions.

Methods: A systematic review was conducted to identify studies investigating prolonged infusions compared to intermittent infusions. Studies were sourced from a previously published review and a systematic search of MEDLINE, Cochrane, Embase and Web of Science databases. Case reports, case series, systematic reviews and non-English language reports were excluded (PROSPERO CRD 42022375397). A meta-analysis with odds ratios (OR) and 95% confidence intervals (CIs) was conducted. When insufficient data were available, a descriptive analysis was undertaken. Risk of bias was assessed using the Robins-I tool.

Results: In total, 566 studies were screened, of which 10 studies were included in the systematic review. All studies were observational, with sample sizes from 21 to 174 PICU patients (median 76; IQR 33-156). There was no reduction in mortality (N = 6 studies; OR 0.60; 95% CI 0.24, 1.51; I2 = 40%) in the prolonged infusion group compared to the intermittent group. There was insufficient data to perform further meta-analyses. The risk of bias was high and the overall quality of evidence was low.

Conclusions: Available studies on prolonged infusions of beta lactams in PICU patients are limited and of low quality. Further research is needed to assess for clinical benefits associated with prolonged beta-lactam infusions for treatment of severe infection.

目的:在儿科重症监护病房(picu), β -内酰胺类抗生素的给药往往是次优的,使危重儿童处于危险之中。我们的目的是研究PICU内长期输注β -内酰胺与间歇输注相比的死亡率、PICU住院时间和药代动力学/药效学(PK/PD)益处。方法:进行系统回顾,以确定研究延长输注与间歇输注的比较。研究来源于先前发表的综述和MEDLINE、Cochrane、Embase和Web of Science数据库的系统搜索。排除病例报告、病例系列、系统评价和非英语报告(PROSPERO CRD 42022375397)。采用优势比(OR)和95%置信区间(CIs)进行meta分析。当数据不足时,进行描述性分析。使用Robins-I工具评估偏倚风险。结果:共筛选566项研究,其中10项纳入系统评价。所有研究均为观察性研究,样本量为21 - 174例PICU患者(中位数为76例;IQR为33-156)。与间歇输注组相比,延长输注组的死亡率没有降低(N = 6项研究;OR 0.60; 95% CI 0.24, 1.51; I2 = 40%)。没有足够的数据进行进一步的meta分析。偏倚风险高,证据总体质量低。结论:关于PICU患者长期输注内酰胺的现有研究有限且质量较低。需要进一步的研究来评估长期输注β -内酰胺治疗严重感染的临床益处。
{"title":"Prolonged Versus Intermittent Beta-Lactam Antibiotic Infusions in Paediatric Critical Care: A Systematic Review and Meta-Analysis.","authors":"Kirsty O'Keefe, Kerina J Denny, Renate Le Marsney, James McCullough, Patricia Gilholm, Kinga A Budai, Agathe Béranger, Csaba Lódi, Mahmoud Obeidat, Gwendoline Ragonnet, Noppadol Wacharachaisurapol, Jason A Roberts, Kristen S Gibbons, Sainath Raman","doi":"10.1111/jpc.70275","DOIUrl":"https://doi.org/10.1111/jpc.70275","url":null,"abstract":"<p><strong>Objective: </strong>In paediatric intensive care units (PICUs), beta-lactam antibiotic administration is often suboptimal, placing critically ill children at risk. We aimed to investigate the mortality, PICU length of stay, and pharmacokinetic/pharmacodynamic (PK/PD) benefits of prolonged beta-lactam infusions in PICU compared to intermittent infusions.</p><p><strong>Methods: </strong>A systematic review was conducted to identify studies investigating prolonged infusions compared to intermittent infusions. Studies were sourced from a previously published review and a systematic search of MEDLINE, Cochrane, Embase and Web of Science databases. Case reports, case series, systematic reviews and non-English language reports were excluded (PROSPERO CRD 42022375397). A meta-analysis with odds ratios (OR) and 95% confidence intervals (CIs) was conducted. When insufficient data were available, a descriptive analysis was undertaken. Risk of bias was assessed using the Robins-I tool.</p><p><strong>Results: </strong>In total, 566 studies were screened, of which 10 studies were included in the systematic review. All studies were observational, with sample sizes from 21 to 174 PICU patients (median 76; IQR 33-156). There was no reduction in mortality (N = 6 studies; OR 0.60; 95% CI 0.24, 1.51; I<sup>2</sup> = 40%) in the prolonged infusion group compared to the intermittent group. There was insufficient data to perform further meta-analyses. The risk of bias was high and the overall quality of evidence was low.</p><p><strong>Conclusions: </strong>Available studies on prolonged infusions of beta lactams in PICU patients are limited and of low quality. Further research is needed to assess for clinical benefits associated with prolonged beta-lactam infusions for treatment of severe infection.</p>","PeriodicalId":16648,"journal":{"name":"Journal of paediatrics and child health","volume":" ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145843792","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Initial Management of Paediatric Acute Leukaemia in Regional and Remote North Queensland, Australia: How Can We Improve? A Multi-Centre Retrospective Cohort Study. 澳大利亚昆士兰北部地区和偏远地区儿童急性白血病的初步治疗:我们如何改进?一项多中心回顾性队列研究。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-25 DOI: 10.1111/jpc.70271
Alyssa Einhorn, Zinat Mohammadpour, Andrew Battle, Vanaja Sabesan

Introduction: Acute leukaemia (AL) is the most common childhood cancer globally. Children with AL who live outside of a major city experience poorer survival rates. Current literature exploring this survival discrepancy focuses on variables related to the patient and family. There is a gap in our understanding of the role of the non-metropolitan healthcare centre. Our study aims to identify how children with AL were initially managed in regional northern Queensland (NQ) hospitals, Australia. Our goal is to provide the necessary foundation for improvements in service delivery and reduce survival discrepancy associated with rurality.

Method: A multi-centre retrospective cohort study of all patients aged ≤ 16 years with AL who presented to all major NQ hospitals between June 2016 and July 2023 was conducted. Clinical and laboratory characteristics on initial presentation alongside initial management were collected from medical records and compared to internationally recognised gold standard recommendations.

Results: This study identified 40 patients. Children with febrile neutropenia received antibiotics at a median time of 3.5 h from initial presentation. There was no difference in fluid delivery (p = 0.29) or chest imaging (p = 0.20) in children with leucocytosis and/or peripheral blasts compared to children without these high-risk laboratory features. There was a difference in allopurinol administration (p = 0.04) dependent on leucocytosis and/or peripheral blast status. Eight (20.0%) children and their families did not receive social work support.

Conclusion: Initial management of children presenting with AL to regional NQ hospitals differed from gold standard management. This study expands on existing dialogue through identifying which key areas of initial management require focused improvement regionally. Implementation of site-specific guidelines on initial management reflecting these findings may improve patient health outcomes regionally.

简介:急性白血病(AL)是全球最常见的儿童癌症。居住在大城市以外的AL患儿存活率较低。目前研究这种生存差异的文献主要集中在与患者和家庭相关的变量上。我们对非大都市医疗保健中心的作用的理解存在差距。我们的研究旨在确定澳大利亚昆士兰北部地区(NQ)医院最初如何管理AL患儿。我们的目标是为改善服务提供和减少与农村相关的生存差异提供必要的基础。方法:对2016年6月至2023年7月在全国各大医院就诊的年龄≤16岁AL患者进行多中心回顾性队列研究。从医疗记录中收集了初始表现和初始管理的临床和实验室特征,并与国际公认的金标准建议进行了比较。结果:本研究确定了40例患者。发热性中性粒细胞减少症患儿在初次就诊后3.5小时内接受抗生素治疗。与没有这些高风险实验室特征的儿童相比,有白细胞增多症和/或外周细胞的儿童在液体输送(p = 0.29)或胸部成像(p = 0.20)方面没有差异。别嘌呤醇给药的差异(p = 0.04)取决于白细胞增多和/或外周细胞状态。8名(20.0%)儿童及其家庭没有得到社会工作支持。结论:区域性NQ医院对AL患儿的初始管理与金标准管理不同。这项研究通过确定需要区域重点改进的初步管理的关键领域,扩大了现有的对话。实施反映这些发现的针对具体地点的初始管理指南可能会在区域内改善患者的健康结果。
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引用次数: 0
Involving Nonspeaking and Speaking Children in Clinical Encounters: An Observational Study of Real-World Clinical Encounters. 让不会说话和会说话的儿童参与临床接触:一项真实世界临床接触的观察性研究。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-23 DOI: 10.1111/jpc.70253
Stuart Ekberg, Susan Danby, Janet Watts, Lara Weinglass, Rachel Cooke, Mariah Nelson, Erin Pitt, Katie Ekberg, Myra Bluebond-Langner, Richard Langner, Natalie Bradford, Patsy Yates, Angela Delaney, Julie Duffield, Amanda Orr, Sara Fleming, Madelon Scully, Sharon Ryan, Anthony Herbert

Aim: This study aimed to identify diverse ways nonspeaking and speaking children are involved in clinical encounters.

Methods: The study analysed video recordings of paediatric palliative care encounters in Australia. Conversation analytic coding methods were used to identify embodied (e.g., gesture) and vocal (e.g., grunting) modes of interaction used by all children and lexical verbalisations (i.e., words) used by speaking children. Analysis focused on interactions between children and adults (both family members and clinicians).

Results: A total of 38 child patients (seven speaking, 31 nonspeaking), 56 family members and 50 clinicians participated across 60 video-recorded encounters with the child patient present. Analysis identified 1737 spates (i.e., periods) of interaction with child patients. Nonspeaking children were involved in a median of 38.0 spates of involvement per hour and speaking children in a median of 58.7 spates per hour. Observed practices of nonspeaking and speaking children included adult clinicians and family members doing something with a child without speaking, identifying the child as a recipient of some action, assessing the child, telling the child something, and physically tending to the child with verbal commentary. Clinicians and adult family members more often initiated spates of involvement (62.9%) than children themselves and were more responsive to spates initiated by nonspeaking children (89.6%) than speaking children (79.3%).

Conclusions: This study demonstrates how children-including nonspeaking children-are regularly involved in clinical encounters. The study findings indicate a need to avoid exclusively focusing on verbal communication, to appreciate the diverse ways that children can be involved in clinical encounters about them.

目的:本研究旨在确定不会说话和会说话的儿童参与临床接触的不同方式。方法:本研究分析了澳大利亚儿科姑息治疗就诊的视频记录。对话分析编码方法用于识别所有儿童使用的具身(如手势)和声音(如咕噜声)互动模式,以及说话儿童使用的词汇化(即单词)。分析的重点是儿童和成人(包括家庭成员和临床医生)之间的互动。结果:共有38名儿童患者(7名会说话,31名不会说话),56名家庭成员和50名临床医生参与了60次与儿童患者在场的视频记录。分析确定了与儿童患者互动的1737个阶段(即时期)。不会说话的孩子平均每小时参与38.0次,会说话的孩子平均每小时参与58.7次。观察到的不会说话和会说话的孩子的做法包括成年临床医生和家庭成员与孩子一起做一些不说话的事情,确定孩子是某些行为的接受者,评估孩子,告诉孩子一些事情,以及用语言评论来照顾孩子。临床医生和成年家庭成员比儿童自己更经常发起参与口角(62.9%),对不会说话的儿童发起的口角(89.6%)比会说话的儿童(79.3%)反应更积极。结论:这项研究证明了儿童——包括不会说话的儿童——是如何经常参与临床接触的。研究结果表明,有必要避免只关注口头交流,要欣赏儿童参与临床接触的各种方式。
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引用次数: 0
I've Never Heard of This! An Approach to Child and Family-Centred Care for Children and Young People With Rare Diseases. 我从来没听说过这个!为患有罕见疾病的儿童和青少年提供以儿童和家庭为中心的护理方法。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-22 DOI: 10.1111/jpc.70267
Lisa J Ewans, Kris Pierce, Eleanor Farley, Rachel Bowden, Carolyn Shalhoub, Elizabeth Emma Palmer

Paediatricians strive to deliver best practice care for their patients. However, when they encounter a child with one of the over 8000 rare diseases, a majority (> 70%) of which have a genetic cause, it is challenging to find clinical guidelines and point-of-care resources to support their practice. This article provides a framework for a collaborative management approach for rare diseases. It draws on the team's experience in delivering multidisciplinary clinics for ultra-rare conditions, running a rare disease registry and undiagnosed disease programme, and in founding a rare disease patient advocacy group for SCN2A-related conditions. This article signposts useful resources to facilitate paediatricians in delivering 'wraparound' rare disease care that is comprehensive, holistic and child and family-centred. These include Australia's first National Recommendations for Rare Disease Health Care and the RARE (Rare Awareness Rare Education) portal led by the national peak body for people living with a rare disease, Rare Voices Australia. Six key approaches are suggested that paediatricians can incorporate into their clinical practice to deliver high quality care for each child and young person with a rare disease. This includes strategies to support a timely diagnosis, including accessing undiagnosed disease programmes and linking children, young people and their caregivers with peers, patient advocacy groups and rare disease registries to reduce isolation and uncertainty. As less than 5% of rare diseases are currently amenable to a targeted therapy, it also suggests resources and approaches to facilitate access to and shared decision-making about research and novel advanced therapeutics.

儿科医生努力为他们的病人提供最佳实践护理。然而,当他们遇到患有8000多种罕见疾病之一的儿童时,其中大多数(约70%)有遗传原因,寻找临床指南和护理点资源来支持他们的实践是具有挑战性的。本文为罕见病的协同管理方法提供了一个框架。它借鉴了该团队在为超罕见疾病提供多学科诊所、运行罕见疾病登记和未确诊疾病规划以及为scn2a相关疾病建立罕见疾病患者倡导小组方面的经验。这篇文章指出了有用的资源,以促进儿科医生提供全面、整体和以儿童和家庭为中心的“全面”罕见病护理。其中包括澳大利亚首个国家罕见疾病保健建议,以及由国家罕见疾病患者高峰机构澳大利亚罕见之声领导的Rare(罕见意识罕见教育)门户网站。建议儿科医生可以将六种关键方法纳入其临床实践,为患有罕见疾病的每个儿童和年轻人提供高质量的护理。这包括支持及时诊断的战略,包括参与未确诊疾病规划,并将儿童、青年及其照料者与同龄人、患者倡导团体和罕见疾病登记处联系起来,以减少孤立和不确定性。由于目前只有不到5%的罕见病可以接受靶向治疗,因此它还建议提供资源和方法,以促进获取和共同决策有关研究和新的先进治疗方法。
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引用次数: 0
Drowning Prevention in Portable Swimming Pools: A Cross-Sectional Survey of Parental Knowledge, Risk Perceptions, and Safety Practices. 便携式游泳池的溺水预防:家长知识、风险认知和安全实践的横断面调查。
IF 1.4 4区 医学 Q2 PEDIATRICS Pub Date : 2025-12-21 DOI: 10.1111/jpc.70257
Amy E Peden, Kyra Hamilton

Aim: Portable swimming pools present a child drowning risk; however, evidence on parental and caregiver knowledge, risk perceptions, and safety practices about these products remains limited.

Methods: We conducted a cross-sectional survey of a representative sample of Australian parents and caregivers of children aged 0-5 years who owned a portable pool. Safety practices examined included pool fencing, active supervision, and emptying and storing the pool immediately after use. Descriptive statistics, non-parametric significance tests, and t-tests (comparing portable pools with in-ground pools) were used to assess knowledge, risk perceptions, and safety practices.

Results: Among 214 respondents, the majority correctly identified supervision (76%; χ2 = 56.54; p < 0.001) and emptying and storing practices (89%; χ2 = 131.89; p < 0.001) as key prevention strategies. In contrast, only 26% demonstrated knowledge of legal fencing requirements (χ2 = 50.54; p < 0.001). Risk perceptions were significantly lower for portable pools compared with in-ground pools. Only 19% reported their portable pool was fenced.

Conclusion: While self-reported supervision and storage practices were high, compliance with fencing requirements, the most effective drowning prevention strategy, was markedly low. Stronger action is needed to promote fencing compliance and confront misconceptions about the safety of shallow portable pools.

目的:便携式游泳池存在儿童溺水风险;然而,关于父母和照顾者对这些产品的知识、风险认知和安全实践的证据仍然有限。方法:我们对拥有便携式游泳池的0-5岁儿童的澳大利亚父母和照顾者的代表性样本进行了横断面调查。检查的安全措施包括游泳池围栏,积极监督,以及在使用后立即清空和储存游泳池。描述性统计、非参数显著性检验和t检验(将便携式水池与地下水池进行比较)用于评估知识、风险认知和安全实践。结果:在214名受访者中,大多数人正确识别了监督(76%);χ2 = 56.54; p 2 = 131.89; p 2 = 50.54; p结论:尽管自我报告的监督和储存做法很高,但对围栏要求的遵守程度明显较低,围栏是最有效的溺水预防策略。需要采取更强有力的行动来促进围栏的遵守,并消除对浅便携式游泳池安全性的误解。
{"title":"Drowning Prevention in Portable Swimming Pools: A Cross-Sectional Survey of Parental Knowledge, Risk Perceptions, and Safety Practices.","authors":"Amy E Peden, Kyra Hamilton","doi":"10.1111/jpc.70257","DOIUrl":"https://doi.org/10.1111/jpc.70257","url":null,"abstract":"<p><strong>Aim: </strong>Portable swimming pools present a child drowning risk; however, evidence on parental and caregiver knowledge, risk perceptions, and safety practices about these products remains limited.</p><p><strong>Methods: </strong>We conducted a cross-sectional survey of a representative sample of Australian parents and caregivers of children aged 0-5 years who owned a portable pool. Safety practices examined included pool fencing, active supervision, and emptying and storing the pool immediately after use. Descriptive statistics, non-parametric significance tests, and t-tests (comparing portable pools with in-ground pools) were used to assess knowledge, risk perceptions, and safety practices.</p><p><strong>Results: </strong>Among 214 respondents, the majority correctly identified supervision (76%; χ<sup>2</sup> = 56.54; p < 0.001) and emptying and storing practices (89%; χ<sup>2</sup> = 131.89; p < 0.001) as key prevention strategies. In contrast, only 26% demonstrated knowledge of legal fencing requirements (χ<sup>2</sup> = 50.54; p < 0.001). Risk perceptions were significantly lower for portable pools compared with in-ground pools. Only 19% reported their portable pool was fenced.</p><p><strong>Conclusion: </strong>While self-reported supervision and storage practices were high, compliance with fencing requirements, the most effective drowning prevention strategy, was markedly low. Stronger action is needed to promote fencing compliance and confront misconceptions about the safety of shallow portable pools.</p>","PeriodicalId":16648,"journal":{"name":"Journal of paediatrics and child health","volume":" ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145804956","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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Journal of paediatrics and child health
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