{"title":"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。","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":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","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":"{\"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\":\"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"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}","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}
NATIONAL REGISTRY SYSTEM FOR HOME MECHANICAL VENTILATION SUPPORT IN CHILDREN: FIRST DATA FROM TURKIYE.
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.
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.
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