NATIONAL REGISTRY SYSTEM FOR HOME MECHANICAL VENTILATION SUPPORT IN CHILDREN: FIRST DATA FROM TURKIYE.

IF 3.5 3区医学 Q2 RESPIRATORY SYSTEM

Respiration Pub Date : 2025-01-14 DOI:10.1159/000543343

Neval Metin Çakar, Merve Selçuk Balcı, Azer Kılıç Başkan, Hüseyin Arslan, Füsun Ünal, Yeliz Koç, Gözde Cavıldak Karaaslan, Sümeyye Sinan, Fatih Ercan, Gökçen Ünal, Hanife Tuğçe Çağlar, Zeynep Efşan Başer, Harun Mamaç, Sinem Can Oksay, Zeynep Reyhan Onay, Raziye Atan, Birce Sunman, Havva İpek Demir, Ece Halis, Bahar Girgin Dindar, Secahattin Bayav, Suat Savaş, Merve Korkmaz, Ebru Köstereli, Selçuk Uzuner, Hakan Yazan, Ali Özdemir, Abdurrahman E Başaran, Gökçen Kartal Ozturk, Ali Ersoy, Beste Özsezen, Ayşen Başaran, Özlem Keskin, Tuğba Ramaslı Gürsoy, Mina Hızal, Gizem Özcan, Pinar Ergenekon, Ayşe A Kılınc Sakallı, Fazilet Karakoc, Bülent Karadağ, Haluk Çokuğraş, Sevgi Pekcan, Tuğba Şişmanlar Eyüboğlu, Ayse Tana Aslan, Saniye Girit, Figen Gülen, Nazan Çobanoğlu, Velat Şen, Yakup Canıtez, Zeynep Seda Uyan, Erkan Çakır, Pınar Ay, Nilay Baş İkizoğlu, Melih Hangül, Güzin Cinel, Nagehan Emiralioğlu, Ela Erdem Eralp, Sedat Öktem, Yasemin Gökdemir

{"title":"NATIONAL REGISTRY SYSTEM FOR HOME MECHANICAL VENTILATION SUPPORT IN CHILDREN: FIRST DATA FROM TURKIYE.","authors":"Neval Metin Çakar, Merve Selçuk Balcı, Azer Kılıç Başkan, Hüseyin Arslan, Füsun Ünal, Yeliz Koç, Gözde Cavıldak Karaaslan, Sümeyye Sinan, Fatih Ercan, Gökçen Ünal, Hanife Tuğçe Çağlar, Zeynep Efşan Başer, Harun Mamaç, Sinem Can Oksay, Zeynep Reyhan Onay, Raziye Atan, Birce Sunman, Havva İpek Demir, Ece Halis, Bahar Girgin Dindar, Secahattin Bayav, Suat Savaş, Merve Korkmaz, Ebru Köstereli, Selçuk Uzuner, Hakan Yazan, Ali Özdemir, Abdurrahman E Başaran, Gökçen Kartal Ozturk, Ali Ersoy, Beste Özsezen, Ayşen Başaran, Özlem Keskin, Tuğba Ramaslı Gürsoy, Mina Hızal, Gizem Özcan, Pinar Ergenekon, Ayşe A Kılınc Sakallı, Fazilet Karakoc, Bülent Karadağ, Haluk Çokuğraş, Sevgi Pekcan, Tuğba Şişmanlar Eyüboğlu, Ayse Tana Aslan, Saniye Girit, Figen Gülen, Nazan Çobanoğlu, Velat Şen, Yakup Canıtez, Zeynep Seda Uyan, Erkan Çakır, Pınar Ay, Nilay Baş İkizoğlu, Melih Hangül, Güzin Cinel, Nagehan Emiralioğlu, Ela Erdem Eralp, Sedat Öktem, Yasemin Gökdemir","doi":"10.1159/000543343","DOIUrl":null,"url":null,"abstract":"Introduction: Advances in neonatal and pediatric intensive care have improved patient survival rates, emphasizing the need for respiratory support in cases of chronic respiratory failure, resulting in the establishment of the Turkish National Pediatric Patients Receiving Home Mechanical Ventilation (HMV) Support Registration System in 2023. This study aims to present the initial findings of the registry.Methods: In this cross-sectional study, epidemiological and demographic data was obtained from the registry and compared between invasive ventilation (IV) and non-invasive ventilation (NIV) groups.Results: The study included 952 patients registered from 23 centers with a median (IQR) age of 6.0 (3.0-12.0) years. IV support was observed in 51.1% of patients (n= 486). There was no difference in sex between IV and NIV groups, but a significant difference in age, nutrition, mobility status and education were observed between the subgroups. The largest patient group had neuromuscular disease, with spinal muscular atrophy being the most common primary diagnosis (15.7%). Most of the caregivers (78.7% in the NIV group and 93.8% in the IV group) received formal training before the initiation of HMV.Conclusion: Turkey's first registry for pediatric HMV patients is introduced. This system helps understand and solve mobility and education issues for these patients in our country. Collaboration with relevant ministries is crucial. In addition, although most of the caregivers have received training before discharge, efforts are still needed to ensure that this rate is 100%. The long-term results will be presented in the future.","PeriodicalId":21048,"journal":{"name":"Respiration","volume":" ","pages":"1-17"},"PeriodicalIF":3.5000,"publicationDate":"2025-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Respiration","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1159/000543343","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"RESPIRATORY SYSTEM","Score":null,"Total":0}

引用次数: 0

Abstract

Introduction: Advances in neonatal and pediatric intensive care have improved patient survival rates, emphasizing the need for respiratory support in cases of chronic respiratory failure, resulting in the establishment of the Turkish National Pediatric Patients Receiving Home Mechanical Ventilation (HMV) Support Registration System in 2023. This study aims to present the initial findings of the registry.

Methods: In this cross-sectional study, epidemiological and demographic data was obtained from the registry and compared between invasive ventilation (IV) and non-invasive ventilation (NIV) groups.

Results: The study included 952 patients registered from 23 centers with a median (IQR) age of 6.0 (3.0-12.0) years. IV support was observed in 51.1% of patients (n= 486). There was no difference in sex between IV and NIV groups, but a significant difference in age, nutrition, mobility status and education were observed between the subgroups. The largest patient group had neuromuscular disease, with spinal muscular atrophy being the most common primary diagnosis (15.7%). Most of the caregivers (78.7% in the NIV group and 93.8% in the IV group) received formal training before the initiation of HMV.

Conclusion: Turkey's first registry for pediatric HMV patients is introduced. This system helps understand and solve mobility and education issues for these patients in our country. Collaboration with relevant ministries is crucial. In addition, although most of the caregivers have received training before discharge, efforts are still needed to ensure that this rate is 100%. The long-term results will be presented in the future.

查看原文本刊更多论文

儿童家庭机械通气支持的国家登记系统：来自土耳其的第一批数据。

新生儿和儿科重症监护的进步提高了患者的生存率，强调了慢性呼吸衰竭病例对呼吸支持的需求，从而在2023年建立了土耳其国家儿科患者接受家庭机械通气（HMV）支持注册系统。本研究旨在介绍该登记的初步发现。方法：在横断面研究中，从登记处获得流行病学和人口学资料，并比较有创通气（IV）组和无创通气（NIV）组。结果：该研究纳入了来自23个中心的952例患者，中位（IQR）年龄为6.0（3.0-12.0）岁。51.1%的患者（n= 486）有静脉支持。IV组和NIV组在性别上无差异，但在年龄、营养、活动状况和教育程度上有显著差异。最大的患者群体有神经肌肉疾病，脊髓性肌萎缩是最常见的主要诊断（15.7%）。大多数护理人员（78.7%为NIV组，93.8%为IV组）在HMV开始前接受过正规培训。结论：土耳其的第一个儿童HMV患者登记处被引入。该系统有助于了解和解决我国这些患者的流动性和教育问题。与相关部委的合作至关重要。此外，虽然大多数护理人员在出院前都接受过培训，但仍需努力确保这一比例达到100%。长期结果将在未来公布。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Respiration 医学-呼吸系统

CiteScore

7.30

自引率

5.40%

发文量

审稿时长

4-8 weeks

期刊介绍： ''Respiration'' brings together the results of both clinical and experimental investigations on all aspects of the respiratory system in health and disease. Clinical improvements in the diagnosis and treatment of chest and lung diseases are covered, as are the latest findings in physiology, biochemistry, pathology, immunology and pharmacology. The journal includes classic features such as editorials that accompany original articles in clinical and basic science research, reviews and letters to the editor. Further sections are: Technical Notes, The Eye Catcher, What’s Your Diagnosis?, The Opinion Corner, New Drugs in Respiratory Medicine, New Insights from Clinical Practice and Guidelines. ''Respiration'' is the official journal of the Swiss Society for Pneumology (SGP) and also home to the European Association for Bronchology and Interventional Pulmonology (EABIP), which occupies a dedicated section on Interventional Pulmonology in the journal. This modern mix of different features and a stringent peer-review process by a dedicated editorial board make ''Respiration'' a complete guide to progress in thoracic medicine.