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[Hospital-based Home Care for Children with Cancer from the Parents̓ Point of View - A Qualitative Exploration of Family Members]. [从父母的角度看癌症儿童的医院家庭护理--家庭成员的定性研究]。
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-05-01 Epub Date: 2024-03-04 DOI: 10.1055/a-2246-2645
Ute Karbach, Sarah Krawiec, Stephan Remmert, Rebecca Toenne, Dirk Reinhardt, Dominik T Schneider, Thorsten Simon, Katharina Waack-Buchholz, Rebecca Kristiment

Background: About 2,200 children and adolescents in Germany per year are diagnosed with oncological diseases. Through now, there are almost no offers for home care services for these patients. There is a pilot program offering hospital-based home care for children and adolescents with cancer in Germany. The perspective of the parents will be researched by a qualitative exploring study.

Patients: In this interview study parents from children with cancer will be interviewed.

Method: A qualitative exploring interview study, seeking the subjective perspective from parents on the hospital-based home care for children with cancer. The sample was drawn criterion-guided. The interviews were transcribed verbatim and analysed using qualitative content analysis. For socio- demographic characteristics the participants respond to an online questionnaire.

Results: Eleven women and three men aged between 30 and 60 years participated in the interviews. The average age of the ill children was 8.43 years. Five parents state that the children's illness did not lead to a reduction in working hours or to the termination of the employment relationship. Hospital-based home care results in subjectively perceived relief in everyday family life, especially in terms of time. Furthermore, a reduction in the psychological perception of stress is described.

Discussion/conclusion: Due to the study design, the results presented here are to be regarded as indicative. In future studies the presented results should be supplemented by quantitative representative studies.

背景:德国每年约有 2200 名儿童和青少年被诊断患有肿瘤疾病。到目前为止,几乎还没有针对这些患者的家庭护理服务。德国有一项试点计划,为患有癌症的儿童和青少年提供以医院为基础的家庭护理服务。我们将通过一项定性探索研究来了解患者家长的观点:在这项访谈研究中,将对癌症儿童的父母进行访谈:方法:进行定性探索性访谈研究,从家长的主观角度了解癌症患儿在医院接受家庭护理的情况。样本是在标准指导下抽取的。对访谈内容进行逐字记录,并使用定性内容分析法进行分析。关于社会人口特征,参与者回答了一份在线问卷:参加访谈的有 11 名女性和 3 名男性,年龄在 30 岁至 60 岁之间。患病儿童的平均年龄为 8.43 岁。五位家长表示,孩子生病并未导致他们减少工作时间或终止雇佣关系。医院的家庭护理使家庭日常生活得到了主观感受上的缓解,尤其是在时间方面。讨论/结论:讨论/结论:由于研究设计的原因,本文介绍的结果只能作为参考。在今后的研究中,应通过具有代表性的定量研究来补充所提供的结果。
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引用次数: 0
Tularemia In A 14-Year-Old Female Pediatric Patient - A Case Report. 一名 14 岁儿科女病人的土拉菌病--病例报告。
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-03-01 DOI: 10.1055/a-2250-5353
Charline Schmitt, Sabine Heine, Arne Simon, Annabelle Wagner
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引用次数: 0
Intracranial Tuberculoma Developing During The Treatment Of A Case With Tuberculous Meningitis Caused By The Zoonotic Mycobacterium Caprae. 在治疗一例由人畜共通的 Caprae 分枝杆菌引起的结核性脑膜炎病例期间出现的颅内结核瘤。
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-06 DOI: 10.1055/a-2244-7061
Fatma Kılınc, Ümmühan Çay, Fatma Tuğba Çetin, Nisanur Tapac, Ozlem Ozgur Gundeslioglu, Derya Alabaz
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引用次数: 0
Inpatient Rsv-Management 2016-2022: Epidemiology and Adherence to A Bronchiolitis Treatment Standard at a German University Children's Hospital. 2016-2022 年住院病人 Rsv 管理:德国一所大学儿童医院的流行病学和支气管炎治疗标准的遵守情况。
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-06 DOI: 10.1055/a-2218-5171
Solvej Heidtmann, Yeliz Baltaci, Sascha Meyer, Michael Zemlin, Rhoikos Furtwängler, Juergen Rissland, Arne Simon

Background: This study analyzes the RSV season 2021/2022 in a referral children's hospital, compares the epidemiology and illness severity with RSV-infected inpatients from 2016 to 2020 and audits the adherence to our internal therapy standard for RSV bronchiolitis.

Material and methods: Inpatients with rtPCR-confirmed RSV infection (Jan. 2016 to Jan. 2022).

Results: The audit comprises 306 RSV inpatients, on average 50 hospitalizations per year; in 03/2020, a rapid RSV Season-Offset was observed. In the winter season 2020/2021, no patient with RSV was hospitalized. Beginning in July, we noticed a rapid increase of RSV-admissions (most cases in Sept./Oct, duration until Dec. 2021; n=53). In 2021-2022, a significant larger share needed PICU admission (9.4% vs 3.2%, p=0.040). Adherence to the internal guidance was low; only 11.8% (n=36) of all patients received supportive treatment without inhalative or systemic medications, 37% of all patients received antibiotics.

Conclusions: This audit confirms the strong impact of public preventive measures directed against SARS-CoV-2 transmission on RSV epidemiology. Few weeks after easing public COVID-19 restrictions (summer 2021), RSV inpatient cases rapidly increased, lasting until Dec. 2021. The audit of bronchiolitis management revealed surprisingly low adherence to the internal guidance, despite a face-to-face educational session with the attending pediatricians in Oct. 2021. Low adherence resulted in an unnecessary exposure of RSV patients to systemic medications of questionable benefit including antibiotics.

研究背景本研究分析了一家儿童转诊医院2021/2022年的RSV季节,比较了2016年至2020年RSV感染住院患者的流行病学和疾病严重程度,并审核了我们对RSV支气管炎内部治疗标准的遵守情况:材料:经 rtPCR 确认感染 RSV 的住院患者(2016 年 1 月至 2022 年 1 月):审计包括 306 名 RSV 住院患者,平均每年 50 例住院;2020 年 3 月,观察到 RSV 季节性快速发病。在 2020/2021 年冬季,没有 RSV 患者住院。从 7 月开始,我们注意到 RSV 住院人数迅速增加(大多数病例发生在 9 月/10 月,持续到 2021 年 12 月;n=53)。2021-2022 年,需要入住 PICU 的比例明显增加(9.4% vs 3.2%,P=0.040)。内部指南的遵守率很低;所有患者中只有 11.8%(n=36)接受了不吸入或全身用药的支持性治疗,37% 的患者接受了抗生素治疗:这次审计证实了针对 SARS-CoV-2 传播的公共预防措施对 RSV 流行病学的重大影响。在放宽公共 COVID-19 限制几周后(2021 年夏季),RSV 住院病例迅速增加,一直持续到 2021 年 12 月。尽管在 2021 年 10 月与儿科主治医生进行了面对面的教育,但对支气管炎管理的审计显示,内部指南的遵守率低得令人吃惊。由于遵守率低,导致 RSV 患者不必要地接受了包括抗生素在内的系统性药物治疗,而这些药物的疗效却值得怀疑。
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引用次数: 0
A Mild Case of Jeune Syndrome Associated with a Recurrent Missense Variant in DYNC2H1: Confirmation of a Genotype-Phenotype Correlation. 与 DYNC2H1 的复发性错义变异有关的轻度 Jeune 综合征病例:基因型与表型相关性的确认。
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-01 Epub Date: 2024-01-15 DOI: 10.1055/a-2235-6201
Marc-Alexander Oestreich, Fabian Keller, Xenia Bovermann, Dominique Braun, Rike Schiller, Luigi Raio, Christiane Zweier, Carmen Casaulta, Jakob Usemann, André Kidszun, Mircea-Horia Popa-Todirenchi
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引用次数: 0
Relapsing Polychondritis with Tracheobronchial Involvement: A Detailed Description of Two Pediatric Cases and Review of the Literature. 气管支气管受累的复发性多软骨炎:两例儿科病例的详细描述和文献综述。
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-01 Epub Date: 2024-01-15 DOI: 10.1055/a-2230-1521
Greta Winter, Tara Löffelmann, Shaakira Chaya, Hannah Kaiser, Nils Kristian Prenzler, Athanasia Warnecke, Martin Wetzke, Thorsten Derlin, Diane Renz, Thomas Stueber, Florian Länger, Katharina Schütz, Nicolaus Schwerk

Relapsing polychondritis (RP) is a rare immune-mediated disease that primarily affects the cartilaginous structures of the ears, nose and airways. The clinical spectrum ranges from mild to severe disease characterized by progressive destruction of cartilage in the tracheobronchial tree leading to airway obstruction and acute respiratory failure. Early diagnosis is crucial to prevent irreversible airway damage and life-threatening complications. Due to its rarity and variability of symptoms, the diagnosis of RP is often delayed particularly in childhood. To address this and increase awareness of this rare disease, we present a detailed case report of two adolescent females affected by RP. We aim to describe the clinical findings, consequences of a delayed diagnosis and provide a review of the current literature.

复发性多软骨炎(RP)是一种罕见的免疫介导疾病,主要影响耳、鼻和呼吸道的软骨结构。该病的临床表现从轻微到严重不等,其特点是气管支气管软骨进行性破坏,导致气道阻塞和急性呼吸衰竭。早期诊断对于预防不可逆的气道损伤和危及生命的并发症至关重要。由于其罕见性和症状的多变性,RP 的诊断往往被延迟,尤其是在儿童时期。为了解决这一问题并提高人们对这种罕见疾病的认识,我们提交了一份关于两名青少年女性 RP 患者的详细病例报告。我们旨在描述临床发现、延迟诊断的后果,并对目前的文献进行回顾。
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引用次数: 0
Ten-year experience of whole lung lavage in pediatric Pulmonary Alveolar Proteinosis. 对小儿肺泡蛋白病进行全肺灌洗的十年经验
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-01 Epub Date: 2024-01-23 DOI: 10.1055/a-2194-3467
Katja Nickel, Katharina Schütz, Julia Carlens, Simon Grewendorf, Martin Wetzke, Oliver Keil, Nils Dennhardt, Vanessa Rigterink, Harald Köditz, Michael Sasse, Christine Happle, Christiane E Beck, Nicolaus Schwerk

Background: Pulmonary Alveolar Proteinosis (PAP) is extremely rare and can be caused by hereditary dysfunction of the granulocyte macrophage colony-stimulating factor receptor (GM-CSF) receptor, autoantibodies against GM-CSF, or other diseases leading to alveolar macrophage (AM) dysfunction. This leads to protein accumulation in the lung and severe dyspnea and hypoxemia. Whole lung lavage (WLL) is the first line treatment strategy.

Methods: Here, we present data from more than ten years of WLL practice in pediatric PAP. WLL performed by the use of a single lumen or double lumen tube (SLT vs. DLT) were compared for technical features, procedure time, and adverse events.

Results: A total of n=57 procedures in six PAP patients between 3.5 and 14.3 years of age were performed. SLT based WLL in smaller children was associated with comparable rates of adverse events but with longer intervention times and postprocedural intensive care treatment when compared to DLT based procedures.

Discussion: Our data shows that WLL is feasible even in small children. DLT based WLL seems to be more effective, and our data supports the notion that it should be considered as early as possible in pediatric PAP.

Conclusion: WLL lavage is possible in small PAP patients but should performed in close interdisciplinary cooperation and with age appropriate protocols.

背景:肺泡蛋白沉积症(PAP)极为罕见,可由粒细胞巨噬细胞集落刺激因子受体(GM-CSF)受体的遗传性功能障碍、GM-CSF自身抗体或导致肺泡巨噬细胞(AM)功能障碍的其他疾病引起。这会导致蛋白质在肺部积聚,出现严重的呼吸困难和低氧血症。全肺灌洗(WLL)是一线治疗策略。方法:在此,我们介绍了十多年来在儿科 PAP 中进行全肺灌洗的数据。我们比较了使用单腔管或双腔管(SLT 与 DLT)进行全肺灌洗的技术特点、手术时间和不良事件:结果:共为 6 名年龄在 3.5 岁至 14.3 岁之间的 PAP 患者进行了 57 次手术。与基于 DLT 的手术相比,基于 SLT 的 WLL 在较小儿童中的不良事件发生率相当,但干预时间和术后重症监护治疗时间更长:讨论:我们的数据显示,WLL 即使在较小的儿童中也是可行的。基于 DLT 的 WLL 似乎更有效,我们的数据支持了应尽早考虑在小儿 PAP 中使用 WLL 的观点:结论:对小儿 PAP 患者进行 WLL 灌洗是可行的,但应在多学科密切合作下进行,并采用适合其年龄的方案。
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引用次数: 0
TB or not TB? Diagnostic Sensitivity, Specifity and Interobserver Agreement in the Radiological Diagnosis of Pulmonary Tuberculosis in Children. 肺结核与否?儿童肺结核放射诊断的敏感性、特异性和观察者之间的一致性
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-01 Epub Date: 2024-02-06 DOI: 10.1055/a-2230-6958
Folke Brinkmann, Jana Hofgrefe, Frank Ahrens, Jürgen Weidemann, Lars Daniel Berthold, Nicolaus Schwerk

Background: The differentiation between latent tuberculosis infection (LTBI) and tuberculosis (TB) relies on radiological changes. Confirming the diagnosis remains a challenge because typical findings are often missing in children. This study evaluates diagnostic sensitivity, specifity and interobserver agreement on the radiological diagnosis of TB by chest-x-rays in accordance to professional specialization and work experience.

Methods: Chest x-rays of 120 children with proven tuberculosis infection were independently evaluated by general radiologists, paediatric radiologists and paediatric pulmonologists. Results were compared to a reference diagnosis created by group of experienced paediatric radiologists and paediatric pulmonologists. Primary endpoints were diagnostic sensitivity and specificity and interobserver variability defined as Krippendorfs alpha of thesel groups compared to the reference diagnosis.

Results: Of the 120 chest x-rays 33 (27,5%) were diagnosed as TB by the reference standard . Paediatric pulmonologist had the highest diagnostic sensitivity (90%) but were less specific (71%) whereas general radiologist were less sensitive (68%) but more secific (95%). The best diagnostic accuracy was achieved by pediatric radiologists with a diagnostic sensitivity of 77% and specificity 95% respectively.

Conclusions: We demonstrated significant interobserver variability and relevant differences in sensitivity and specificity in the radiological diagnosis of TB between the groups. Paediatric radiologists showed the best diagnostic performance. As the diagnosis of pulmonary TB has significant therapeutic consequences for children they should be routinely involved in the diagnostic process.

背景:潜伏肺结核感染(LTBI)和肺结核(TB)之间的鉴别依赖于放射学变化。由于儿童往往缺乏典型的检查结果,因此确诊仍是一项挑战。本研究评估了胸部 X 光片对肺结核放射学诊断的敏感性、特异性和观察者之间的一致性,并将其与专业特长和工作经验挂钩:方法:由普通放射科医生、儿科放射科医生和儿科肺病科医生对 120 名确诊为肺结核感染的儿童的胸部 X 光片进行独立评估。评估结果与由经验丰富的儿科放射科医生和儿科肺病科医生共同制定的参考诊断结果进行比较。主要终点是诊断灵敏度和特异性,以及与参考诊断相比的观察者间变异性(定义为两组的 Krippendorfs alpha):在 120 张胸部 X 光片中,有 33 张(27.5%)按参考标准诊断为肺结核。儿科肺科医生的诊断灵敏度最高(90%),但特异性较低(71%),而普通放射科医生的灵敏度较低(68%),但特异性较高(95%)。儿科放射科医生的诊断准确率最高,诊断灵敏度为 77%,特异性为 95%:结论:我们发现观察者之间存在明显的差异,各组在肺结核放射诊断的敏感性和特异性方面也存在相关差异。儿科放射医师的诊断效果最好。由于肺结核的诊断对儿童的治疗有重大影响,因此他们应定期参与诊断过程。
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引用次数: 0
Correction: Pulmonary Alveolar Proteinosis and new therapeutic concepts. 更正:肺泡蛋白病和新的治疗概念。
IF 1.2 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-01 Epub Date: 2024-05-15 DOI: 10.1055/a-2320-5286
Claudio Rodriguez Gonzalez, Hannah Schevel, Gesine Hansen, Nicolaus Schwerk, Nico Lachmann
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引用次数: 0
Editorial. 社论
IF 1 4区 医学 Q3 PEDIATRICS Pub Date : 2024-02-01 Epub Date: 2024-02-22 DOI: 10.1055/a-2241-9672
Anna Wiemers, Stefanie Dillenhöfer, Anne Schlegtendal
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引用次数: 0
期刊
Klinische Padiatrie
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