Journal of Cystic Fibrosis最新文献

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87 Activity of β-lactams and new β-lactamase inhibitors in multidrug-resistant Burkholderia contaminans 87 β-内酰胺类药物和新型 β-内酰胺酶抑制剂在耐多药伯克霍尔德菌污染菌中的活性

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/S1569-1993(24)00929-9

M. Romero, J. Degrossi, J. Pinheiro, S. Abel, M. Venuta, F. Pasteran, C. Castaños, A. Isasmendi

引用次数: 0

89 Regulation and function of the fibrillar adhesin CdrA in Pseudomonas aeruginosa isolates that persist after initiation of elexacaftor/tezacaftor/ivacaftor in children with cystic fibrosis 89 囊性纤维化儿童开始使用 elexacaftor/tezacaftor/ivacaftor 后持续存在的铜绿假单胞菌分离物中纤维粘附蛋白 CdrA 的调控和功能

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/S1569-1993(24)00931-7

M. Barrington, N. Fazio, K. Duong, E. Moss, R. Abarbanel, K. Kurti, A. Zheng, C. Reichhardt

引用次数: 0

19 Microbial and metabolic ecology of expectorated sputum from people with cystic fibrosis from the STOP2 study 19 STOP2 研究中囊性纤维化患者排出的痰中的微生物和代谢生态学情况

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/S1569-1993(24)00862-2

K. Whiteson, S. Dunham, J. Rothman, L. Carmody, L. Kalikan, L. Caverly, J. LiPuma

引用次数: 0

52 Specific Pseudomonas aeruginosa IgG levels before and after elexacaftor/tezacaftor/ivacaftor treatment 52 elexacaftor/tezacaftor/ivacaftor治疗前后的特异性铜绿假单胞菌IgG水平

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/S1569-1993(24)00895-6

T. Bryrup, D. Faurholt-Jepsen, M. Skov, T. Katzenstein, I. Mathiesen, J. Helweg-Larsen, H. Johansen, T. Qvist, T. Pressler

引用次数: 0

59 Pseudomonas aeruginosa apr-type 1 secretion system is a modulator of the Toll-like receptor 5-mediated epithelial inflammatory response 59 铜绿假单胞菌apr-1 型分泌系统是 Toll 样受体 5 介导的上皮炎症反应的调节器

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/S1569-1993(24)00902-0

M. Gaudet, R. Lévesque, D. Nguyen, S. Rousseau

引用次数: 0

Publication Information 出版信息

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/S1569-1993(24)00841-5

引用次数: 0

66 Optimization of human DNA depletion and microbe-enrichment techniques from oropharyngeal swabs: Preparing for shotgun metagenomic analysis in the PROMISE-peds and BEGIN observational studies 66 从口咽拭子中优化人类 DNA 删除和微生物富集技术：为 PROMISE-peds 和 BEGIN 观察性研究中的猎枪元基因组分析做准备

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/S1569-1993(24)00909-3

D. Bouzek, C. Pope, A. Dutta, C. Miller, D. Wolter, H. Hayden, L. Hoffman

引用次数: 0

E-learning within the European cystic fibrosis society - A multidisciplinary cross-sectional survey 欧洲囊性纤维化协会内部的电子学习--一项多学科交叉调查。

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/j.jcf.2024.07.003

Background

Continuing professional development (CPD) is a component of practice that spans all disciplines within cystic fibrosis (CF). E-learning resources theoretically represent flexible, low cost and time efficient methods of CPD. We aimed to explore European Cystic Fibrosis Society (ECFS) members' and CF health professional communities’ current views, experiences and perceptions of e-learning and the ECFS education platform (ECFS-EP).

Methods

An online cross-sectional survey was developed by the ECFS Education Committee and circulated via the ECFS conference, emails and within the society subgroups between June and September 2023.

Results

547 responses were received from 58 countries; 57 % of responders were ECFS members. A wide range of specialities were represented from the multidisciplinary team including 36 % clinicians. The majority of respondents (63 %) spent 6 or more hours a week on their professional education. Online platforms were used either weekly (34 %) or monthly (37 %); 54 % of respondents had used the ECFS-EP and this was rated favourably overall, specifically for content quality. Preferred formats for education were articles and medium length (15–30 min) webinars.

Conclusions

This multidisciplinary cohort survey illustrates contemporary practice and opinion relating to e-learning and the ECFS-EP. Strengths include the high number of responses and the wide range of countries and specialities represented. Results suggest the ECFS-EP is valued and highlights priority topics, preferred formats and opportunities to optimise awareness. Results support continued provision and oversight of high quality education via an online platform. Continued success will rely on learning from user experience and feedback to inform future practice.

背景：持续专业发展（CPD）是囊性纤维化（CF）各学科实践的一个组成部分。从理论上讲，电子学习资源是一种灵活、低成本、省时的 CPD 方法。我们旨在探索欧洲囊性纤维化协会（ECFS）成员和囊性纤维化健康专业人士目前对电子学习和ECFS教育平台（ECFS-EP）的看法、经验和认知：方法：ECFS教育委员会制定了一项在线横断面调查，并于2023年6月至9月期间通过ECFS会议、电子邮件和学会分组进行分发：结果：共收到来自58个国家的547份回复；57%的回复者为ECFS会员。多学科团队中各专业均有代表，包括 36% 的临床医生。大多数受访者（63%）每周在专业教育上花费 6 小时或更多时间。受访者每周（34%）或每月（37%）使用在线平台；54%的受访者使用过ECFS-EP，总体评价良好，尤其是在内容质量方面。首选的教育形式是文章和中等长度（15-30 分钟）的网络研讨会：这项多学科群组调查说明了与电子学习和ECFS-EP相关的当代实践和观点。调查的优点包括回复数量多，代表的国家和专业范围广。调查结果表明，ECFS-EP受到重视，并突出了优先主题、首选形式和优化意识的机会。结果支持继续通过在线平台提供和监督高质量的教育。要想继续取得成功，就必须从用户体验和反馈中吸取经验教训，为今后的实践提供参考。

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引用次数: 0

Impact of COVID-19 infection on lung function and nutritional status amongst individuals with cystic fibrosis: A global cohort study COVID-19 感染对囊性纤维化患者肺功能和营养状况的影响：全球队列研究。

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/j.jcf.2024.07.019

Julie Semenchuk , Yumi Naito , Susan C. Charman , Siobhán B Carr , Stephanie Y. Cheng , Bruce C. Marshall , Albert Faro , Alexander Elbert , Hector H. Gutierrez , Christopher H. Goss , Bulent Karadag , Pierre-Régis Burgel , Carla Colombo , Marco Salvatore , Rita Padoan , Géraldine Daneau , Satenik Harutyunyan , Nataliya Kashirskaya , Laura Kirwan , Peter G Middleton , Rebecca Cosgriff

Background

Factors associated with severe COVID-19 infection have been identified; however, the impact of infection on longer-term outcomes is unclear. The objective of this study was to examine the impact of COVID-19 infection on the trajectory of lung function and nutritional status in people with cystic fibrosis (pwCF).

Methods

This is a retrospective global cohort study of pwCF who had confirmed COVID-19 infection diagnosed between January 1, 2020 and December 31, 2021. Forced expiratory volume in one second percent predicted (ppFEV₁) and body mass index (BMI) twelve months prior to and following a diagnosis of COVID-19 were recorded. Change in mean ppFEV₁ and BMI were compared using a t-test. A linear mixed-effects model was used to estimate change over time and to compare the rate of change before and after infection.

Results

A total of 6,500 cases of COVID-19 in pwCF from 33 countries were included for analysis. The mean difference in ppFEV₁ pre- and post-infection was 1.4 %, (95 % CI 1.1, 1.7). In those not on modulators, the difference in rate of change pre- and post-infection was 1.34 %, (95 % CI -0.88, 3.56) per year (p = 0.24) and -0.74 % (-1.89, 0.41) per year (p = 0.21) for those on elexacaftor/tezacaftor/ivacaftor. No clinically significant change was noted in BMI or BMI percentile before and after COVID-19 infection.

Conclusions

No clinically meaningful impact on lung function and BMI trajectory in the year following infection with COVID-19 was identified. This work highlights the ability of the global CF community to unify and address critical issues facing pwCF.

背景：已发现与严重 COVID-19 感染相关的因素，但感染对长期结果的影响尚不清楚。本研究旨在探讨 COVID-19 感染对囊性纤维化患者（pwCF）肺功能和营养状况的影响：这是一项回顾性全球队列研究，研究对象为 2020 年 1 月 1 日至 2021 年 12 月 31 日期间确诊感染 COVID-19 的囊性纤维化患者。研究记录了确诊 COVID-19 前后 12 个月的一秒内预测用力呼气容积 (ppFEV1) 和体重指数 (BMI)。采用 t 检验比较平均 ppFEV1 和 BMI 的变化。采用线性混合效应模型估计随时间的变化，并比较感染前后的变化率：共有来自 33 个国家的 6,500 例 COVID-19 感染者被纳入分析范围。感染前后 ppFEV1 的平均差异为 1.4%（95 % CI 1.1，1.7）。在未使用调节剂的患者中，感染前后的变化率差异为每年 1.34 % (95 % CI -0.88, 3.56) (p = 0.24)，在使用 elexacaftor/tezacaftor/ivacaftor 的患者中，差异为每年 -0.74 % (-1.89, 0.41) (p = 0.21)。COVID-19感染前后，BMI或BMI百分位数未发现有临床意义的变化：结论：在感染 COVID-19 后的一年中，肺功能和 BMI 轨迹未发现有临床意义的影响。这项工作凸显了全球 CF 社区团结一致、解决 pwCF 面临的关键问题的能力。

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引用次数: 0

Health care resource utilization preceding death or lung transplantation in people with cystic fibrosis 囊性纤维化患者死亡或肺移植前的医疗资源利用情况：囊性纤维化患者移植或死亡前的 HCRU。

IF 5.4 2区医学 Q1 RESPIRATORY SYSTEM

Journal of Cystic Fibrosis

Pub Date : 2024-09-01 DOI: 10.1016/j.jcf.2024.03.001

Background

We studied the health care resource utilization (HCRU) and associated costs in the year preceding LT in pwCF or death without LT, and we estimated the overall cost of LT.

Methods

We performed a linkage between 2006 and 2017 data from the French CF Registry (FCFR) and the French health claims database (Système National des Données de Santé; SNDS). The HCRU and associated costs were described the year before LT or before death without LT, and two years after LT.

Results

Among the 7,671 patients included in the FCFR, 6,187 patients (80.7 %) were successfully matched to patients in the SNDS (males (m): 51.9 %, mean±SD age at the end of follow-up: 24.6 ± 13.6). Overall, 166 patients died without LT (m: 47.6 %, age at death: 30.4 ± 14.5) and 767 patients with primary LT (m: 48.2 %, age at transplantation: 28.0 ± 9.1) were identified. HCRU was lower among patients who died without receiving LT, with marked differences in the cost of hospital stays. The mean total cost per patient was €66,759 ± 38,249 in the year before death, €149,374 ± 62,678 in the year preceding LT, €63,919 ± 35,399 in the first year following LT, and €42,813 ± 39,967 in the second year of follow-up.

Conclusion

Our results indicate that HCRU was two times lower in the year before death in non-transplant pwCF than in the year before LT, which may reflect inappropriate care of CF in patients who died without receiving LT. It also shows the cost associated with LT.

背景：我们研究了肺结核患者LT前一年或无LT死亡前一年的医疗资源利用率（HCRU）和相关费用，并估算了LT的总体费用：我们对法国CF登记处（FCFR）和法国健康索赔数据库（SNDS）中2006年至2017年的数据进行了关联。HCRU和相关费用在LT前一年或未进行LT而死亡前一年以及LT后两年进行了描述：在纳入 FCFR 的 7671 名患者中，有 6187 名患者（80.7%）与 SNDS 中的患者成功配对（男性（m），51.9%，平均（±SD））：男性（男：51.9%，随访结束时的平均年龄（±SD）：24.6 ± 13.6）。总体而言，166 名患者在未接受 LT 治疗的情况下死亡（男：47.6%，死亡时年龄：30.4 ± 14.5），767 名患者接受了原发性 LT 治疗（男：48.2%，移植时年龄：28.0 ± 9.1）。未接受LT的死亡患者的HCRU较低，住院费用差异明显。每位患者死亡前一年的平均总费用为66,759欧元（38,249），LT前一年为149,374欧元（62,678），LT后第一年为63,919欧元（35,399），随访第二年为42,813欧元（39,967）：我们的研究结果表明，未接受移植手术的儿童肺结核患者死亡前一年的 HCRU 是接受 LT 前一年的两倍，这可能反映了未接受 LT 而死亡的儿童肺结核患者护理不当。这也显示了与 LT 相关的成本。

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引用次数: 0

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