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Diagnosis journey for children with juvenile idiopathic arthritis: a qualitative study. 幼年特发性关节炎患儿的诊断历程:一项定性研究。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2024-327426
Aurelie Chausset, Caroline Freychet, Anne Lohse, Alexandre Belot, Etienne Merlin, Stephane Echaubard, Anne-Marie Schott, Jonathan Lachal

Objective: The objective is to explore the journey to diagnosis and referral pathway from the onset of symptoms to the initial assessments at paediatric rheumatology (PR) centres, based on the experience of children with juvenile idiopathic arthritis (JIA) and their parents.

Design: We conducted a qualitative study with semistructured interviews. Our qualitative and phenomenological procedure applied interpretative phenomenological analysis.

Participants: 19 families of children diagnosed with JIA 4-24 months before the study began (22 parents, 12 children>11 years), across 4 PR centres.

Main outcome measures: The results highlight the contrasting feelings of children and their parents on the referral pathway and interactions with primary care physicians (PCPs).

Results: Four superordinate themes emerged: (1) the journey undertaken by families from initially trivialising the first symptoms to a growing sense of urgency, (2) the perception gap between the families' growing disquiet and first medical interventions, (3) the lack of guidance from physicians prompting parents to initiate action and (4) the various elements of the care pathway that influenced the way the diagnosis was experienced and its impact.

Conclusion: The psychosocial consequences of delayed diagnosis in JIA should not be underestimated, especially for adolescents. The views and experiences of children and their parents on the diagnostic journey should be implemented in training programmes and guidelines for PCPs. The development of online supports, integrating the latest medical knowledge with testimonials from families about their experiences, with a common language for physicians and the general population, can facilitate communication and empower families to navigate the healthcare system.

Trial registration number: NCT05696340.Cite Now.

目的:目的:根据幼年特发性关节炎(JIA)患儿及其家长的经验,探讨从症状出现到儿科风湿病(PR)中心进行初步评估的诊断过程和转诊途径:设计:我们通过半结构式访谈开展了一项定性研究。我们的定性和现象学程序采用了解释现象学分析:19个在研究开始前4-24个月被诊断为JIA的儿童家庭(22名家长,12名年龄大于11岁的儿童),分布在4个PR中心:主要结果测量:结果强调了儿童及其父母在转诊途径以及与初级保健医生(PCP)互动方面的不同感受:结果:出现了四个重要主题:(1) 家庭从最初对最初症状的轻视到日益增长的紧迫感;(2) 家庭日益增长的不安与首次医疗干预之间的认知差距;(3) 缺乏医生的指导,促使家长主动采取行动;(4) 影响诊断方式及其影响的护理路径的各种因素:结论:不能低估JIA诊断延迟的社会心理后果,尤其是对青少年的影响。儿童及其父母在诊断过程中的观点和经历应纳入初级保健医生的培训计划和指南中。开发在线支持工具,将最新的医学知识与来自家庭的经验之谈相结合,并为医生和普通大众提供共同语言,可以促进沟通,增强家庭在医疗系统中的能力:NCT05696340.立即引用。
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引用次数: 0
Natural history of spinal cord compression stage AFMS3 in infants with achondroplasia: retrospective cohort study. 软骨发育不全婴儿脊髓受压AFMS3期的自然史:回顾性队列研究。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2024-327035
Moira Shang-Mei Cheung, Alessandra Cocca, Charlotte H Harvey, Connor Stephen S Brett, Amaka C Offiah, Stephanie Borg, Nathan Jenko, Felice D'Arco, Dominic Thompson

Background and objective: Foramen magnum stenosis (FMS) is a common, serious complication of achondroplasia in infancy and associated with sudden infant death. The Achondroplasia Foramen Magnum Score (AFMS; 0-4) is used to classify the severity of stenosis to inform appropriate neurosurgical management. Infants with AFMS4 are referred for neurosurgery, while well children with AFMS3 undergo repeat MRI routinely after 12 months.As the natural history of children with AFMS3 is currently unclear, the objective was to review follow-up MRI scans of infants initially classified as AFMS3 to define more clearly the evolution of this degree of stenosis.

Design: This retrospective cohort study, from two tertiary centres, included infants with a confirmed diagnosis of achondroplasia and AFMS3 on initial MRI who subsequently underwent repeat MRI or proceeded straight to neurosurgery.

Results: Twenty-two cases satisfied the inclusion criteria. Mean age in months was 6.23 (SD±3.82) and 17.95 (SD±7.68) at baseline and follow-up scans, respectively. Follow-up MRI showed no change in 23% (N=5), improvement in 36% (N=8) to either AFMS1 (N=5) or AFMS2 (N=3). There was progression in 41% to AFMS4 (N=8). One case had neurosurgey without follow-up MRI (N=1).

Conclusions: These results support MRI screening for FMS in infants with achondroplasia. Furthermore, infants with AFMS3 should undergo follow-up MRI as over 40% progress prompting neurosurgical intervention. There is currently no consensus on frequency or timing of screening for AFMS3 in achondroplasia; however, we suggest that guidance for follow-up imaging is modified to 6 months to detect progression earlier in this at-risk cohort.

背景和目的:枕骨大孔狭窄(FMS)是婴儿期软骨发育不全的常见严重并发症,与婴儿猝死有关。软骨发育不全枕骨大孔评分(AFMS;0-4 分)用于对狭窄的严重程度进行分类,以便为适当的神经外科治疗提供依据。由于 AFMS3 患儿的自然病史目前尚不清楚,我们的目的是对最初被归类为 AFMS3 的婴儿进行磁共振成像随访扫描,以便更清楚地界定这种狭窄程度的演变过程:这项回顾性队列研究来自两个三级医疗中心,研究对象包括初次核磁共振成像确诊为软骨发育不全和AFMS3的婴儿,这些婴儿随后接受了重复核磁共振成像或直接接受了神经外科手术:22例符合纳入标准。基线扫描和随访扫描时的平均年龄分别为 6.23 个月(SD±3.82)和 17.95 个月(SD±7.68)。随访磁共振成像显示,23%的患者(5 例)病情无变化,36%的患者(8 例)病情有所改善,转为 AFMS1(5 例)或 AFMS2(3 例)。41%的患者病情恶化为 AFMS4(8 例)。有一例患者在未进行磁共振成像随访的情况下出现神经瘫痪(N=1):这些结果支持通过磁共振成像筛查软骨发育不全婴儿的 FMS。此外,患有 AFMS3 的婴儿应接受磁共振成像随访,因为超过 40% 的婴儿病情进展会导致神经外科干预。目前还没有就软骨发育不全的 AFMS3 筛查频率或时间达成共识;但是,我们建议将随访成像的指导时间改为 6 个月,以便更早地发现这一高风险人群的病情进展。
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引用次数: 0
Correlations between ambient air pollution and the prevalence of hospitalisations and emergency room visits for respiratory diseases in children: a systematic review. 环境空气污染与儿童呼吸道疾病住院和急诊就诊率之间的相关性:系统综述。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2023-326214
Aline Priscila de Souza, Carla Cristina Souza Gomez, Maria Angela Gonçalves de Oliveira Ribeiro, Paula Dornhofer Paro Costa, José Dirceu Ribeiro

Objective: It is known that exposure to air pollution is associated with an increased risk for cardiovascular and respiratory diseases. This review aimed to summarise observational studies on the impact of short and long-term exposure to ambient air pollution on prevalence of hospitalisations and/or emergency department visits caused by respiratory diseases in children and adolescents.

Sources: Pubmed, Scopus, Embase and Cochrane Library databases were searched for the years 2018 to December 2022, including studies in any language.

Summary of the findings: A total of 15 studies published between 2018 and 15 January 2022 were included in this review. PM2.5 was the most type of particulate matter studied. Short-term exposure to PM2,5, PM10, NO2, SO2 and O3, even at concentrations less than the current health-based guidelines, was significantly correlated with increased risk of outpatient/hospital visits and hospitalisations for respiratory diseases by children.

Conclusions: Our findings emphasise the importance and urgency of long-term control of air pollution and pollution-related diseases, especially among children and adolescents. There is a need for further research employing more homogeneous methodologies for assessing exposure and outcome measurements, in order to enable systematic reviews with meta-analysis.

目的:众所周知,暴露于空气污染与心血管和呼吸系统疾病风险的增加有关。本综述旨在总结有关短期和长期暴露于环境空气污染对儿童和青少年呼吸系统疾病住院和/或急诊就诊率影响的观察性研究:检索了2018年至2022年12月的Pubmed、Scopus、Embase和Cochrane图书馆数据库,包括任何语言的研究:本综述共纳入了 2018 年至 2022 年 1 月 15 日期间发表的 15 项研究。PM2.5是研究最多的颗粒物类型。短期暴露于PM2,5、PM10、二氧化氮、二氧化硫和臭氧,即使浓度低于当前基于健康的指南,也与儿童因呼吸道疾病门诊/住院就诊和住院风险的增加显著相关:我们的研究结果强调了长期控制空气污染和污染相关疾病(尤其是儿童和青少年)的重要性和紧迫性。有必要进一步开展研究,采用更加统一的方法来评估暴露和结果测量,以便进行荟萃分析的系统综述。
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引用次数: 0
Language ability and virtual mental healthcare utilisation among immigrant and refugee youth: a population-based cohort study. 移民和难民青年的语言能力与虚拟心理保健使用情况:一项基于人群的队列研究。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2023-326507
Hodan Mohamud, Alene Toulany, Sonia M Grandi, Azmina Altaf, Longdi Fu, Rachel Strauss, Natasha Ruth Saunders

Background and objectives: The widespread adoption of virtual care during the pandemic may not have been uniform across populations, including among paediatric immigrants and refugees. We sought to examine the association between virtual mental healthcare utilisation and immigration factors.

Methods: This population-based cohort study of immigrants and refugees (3-17 years) used linked health administrative databases in Ontario, Canada (March 2020 to December 2021). Exposures included self-reported Canadian language ability (CLA) at arrival and immigration category (economic class, family class and refugee). The primary outcome was the visit modality (inperson/virtual) measured as a rate of physician-based mental healthcare visits. Modified Poisson regression model estimated adjusted rate ratios (aRRs) with 95% CIs.

Results: Among 22 420 immigrants, 12 135 (54%) did not have CLA (economic class: 6310, family class: 2207, refugees: 3618) and 10 285 did (economic class; 6293, family class: 1469, refugees: 2529). The cohort's mean age (SD) was 12.0 (4.0) years and half (50.3%) were female. Of 71 375 mental health visits, 47 989 (67.2%) were delivered virtually. Compared with economic class immigrants with CLA (referent), refugees with and without CLA had a lower risk of virtual care utilisation (CLA: aRR 0.89, 95% CI 0.86 to 0.93; non-CLA: aRR 0.80, 95% CI 0.77 to 0.83), as did family class immigrants with CLA (aRR 0.96, 95% CI 0.92 to 0.99). No differences in virtual care utilisation were observed among economic class immigrants with CLA and other immigrant groups.

Conclusions: Language ability at arrival and immigration category are associated with virtual mental healthcare utilisation. Whether findings reflect user preference or inequities in accessibility, particularly for refugees and those without CLA at arrival, warrants further study.

背景和目的:在大流行病期间,包括儿科移民和难民在内的不同人群广泛采用虚拟医疗可能并不一致。我们试图研究虚拟心理保健的使用与移民因素之间的关联:这项针对移民和难民(3-17 岁)的人群队列研究使用了加拿大安大略省的链接健康管理数据库(2020 年 3 月至 2021 年 12 月)。暴露因素包括抵达时自我报告的加拿大语言能力(CLA)和移民类别(经济阶层、家庭阶层和难民)。主要结果是以医生心理保健就诊率衡量的就诊方式(面对面/虚拟)。修改后的泊松回归模型估算出了调整后的比率比(aRRs)及 95% CIs:在 22 420 名移民中,12 135 人(54%)没有 CLA(经济阶层:6310 人,家庭阶层:2207 人,难民:3618 人),10 285 人有 CLA(经济阶层:6293 人,家庭阶层:1469 人,难民:2529 人)。群体的平均年龄(标准差)为 12.0(4.0)岁,半数(50.3%)为女性。在 71375 人次的精神健康检查中,47989 人次(67.2%)是通过虚拟方式进行的。与有CLA的经济阶层移民(参照者)相比,有CLA和无CLA的难民使用虚拟医疗的风险较低(有CLA:aRR为0.89,95% CI为0.86至0.93;无CLA:aRR为0.80,95% CI为0.77至0.83),有CLA的家庭阶层移民也是如此(aRR为0.96,95% CI为0.92至0.99)。有 CLA 的经济类移民与其他移民群体在虚拟医疗使用方面没有差异:结论:抵达时的语言能力和移民类别与虚拟精神医疗的使用率有关。研究结果是否反映了用户的偏好或可及性方面的不平等,尤其是对难民和抵达时没有 CLA 的人而言,还有待进一步研究。
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引用次数: 0
Towards evidence-based medicine for paediatricians. 为儿科医生提供循证医学。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2024-328184
Bob Phillips
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引用次数: 0
Highlights from the literature. 文献亮点
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2024-328204
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引用次数: 0
Retrospective validation of the SPOT PEWScore using over 2 million inpatient observations. 利用 200 多万住院病人的观察结果对 SPOT PEWScore 进行回顾性验证。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2024-327393
Samiran Ray, Duncan Shepherd
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引用次数: 0
Improving knowledge of rare disorders since 1993: the Australian Paediatric Surveillance Unit. 自 1993 年以来对罕见疾病的认识不断提高:澳大利亚儿科监测单位。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2023-326116
Elizabeth J Elliott, Suzy Teutsch, Carlos Nunez, Anne Morris, Guy D Eslick

The Australian Paediatric Surveillance Unit (APSU), established in 1993 to address the paucity of national data on rare childhood disorders, has become an invaluable research resource. It facilitates prospective, active surveillance for a variety of rare disorders, with monthly reporting by ~1500 paediatricians, who are invited to notify incident cases and provide demographic and clinical data. APSU is highly collaborative (used by >400 individuals/organisations), patient-informed and productive (>300 publications). In 30 years, 72 studies have been initiated on rare infections, and genetic, psychological and neurological disorders, and injuries. Return rates of monthly report cards were >90% for 30 years and paediatricians have provided data for >90% of notified cases. Although there are limitations, including case underascertainment in remote regions, APSU often provides the only available national data. APSU has assisted the government in reporting to the WHO, developing national strategies, informing inquiries and investigating disease outbreaks. APSU data have informed paediatrician education, practice, policy, and service development and delivery. APSU was integral in establishing the International Network of Paediatric Surveillance Units (INoPSU) and supporting development of other units. APSU's expanded remit includes one-off surveys, hospital audits, systematic reviews, studies on the impacts of rare disorders on families, surveillance evaluations, and joint studies with INoPSU members. Paediatricians value the APSU, reporting that APSU data inform their practice. They must be congratulated for an outstanding collective commitment to the APSU, in providing unique data that contribute to our understanding of rare disorders and support optimal, evidence-based care and improved child health outcomes.

澳大利亚儿科监测单位(APSU)成立于 1993 年,旨在解决全国罕见儿童疾病数据匮乏的问题,现已成为一项宝贵的研究资源。它为各种罕见疾病的前瞻性、主动监测提供了便利,每月约有 1500 名儿科医生应邀报告病例,并提供人口统计和临床数据。APSU 具有高度的协作性(有超过 400 名个人/组织使用)、患者知情性和高产性(发表文章超过 300 篇)。30 年来,已启动 72 项研究,涉及罕见感染、遗传、心理和神经疾病以及伤害。30 年来,每月报告卡的回收率超过 90%,儿科医生提供了超过 90% 的通报病例数据。尽管存在一些局限性,包括偏远地区的病例确认不足,但 APSU 经常提供唯一可用的全国数据。APSU 协助政府向世界卫生组织报告、制定国家战略、为调查提供信息以及调查疾病爆发。APSU 的数据为儿科医生的教育、实践、政策以及服务的开发和提供提供了依据。APSU 在建立国际儿科监测单位网络 (INoPSU) 和支持其他单位的发展方面发挥了不可或缺的作用。APSU 的职责范围不断扩大,包括一次性调查、医院审计、系统性审查、罕见疾病对家庭影响的研究、监测评估以及与 INoPSU 成员的联合研究。儿科医生非常重视 APSU,他们表示 APSU 的数据为他们的实践提供了依据。他们为 APSU 做出了杰出的集体承诺,提供了独特的数据,促进了我们对罕见病的了解,支持了以证据为基础的最佳治疗,改善了儿童健康状况,我们必须向他们表示祝贺。
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引用次数: 0
Triage tools in the paediatric emergency department. 儿科急诊室的分诊工具。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2024-328198
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引用次数: 0
Rare presentation of large lymphatic malformation of left orbit. 罕见的左眼眶大淋巴畸形。
IF 4.3 3区 医学 Q1 PEDIATRICS Pub Date : 2024-11-19 DOI: 10.1136/archdischild-2024-327705
Cheryl Keel, Kathryn Mullan, Katherine Shirley, Andrew Thompson, David Cummins
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引用次数: 0
期刊
Archives of Disease in Childhood
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