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National Registry for Home Mechanical Ventilation in Children from Turkey
Neval Metin Çakar1, Merve Selçuk Balcı1, Azer Kılıç Başkan2
1Division of Pediatric Pulmonology, Department of Pediatrics, Faculty of Medicine, Marmara University, Istanbul, Turkey.
Insights
Turkey established a national registry for pediatric home mechanical ventilation (HMV) support in 2023. Initial findings highlight patient demographics and the need for improved caregiver training to ensure comprehensive support for children with chronic respiratory failure.
Area of Science:
- Pediatric critical care medicine
- Respiratory medicine
- Public health registries
Background:
- Improved survival in pediatric intensive care necessitates respiratory support for chronic respiratory failure.
- The Turkish National Pediatric Patients Receiving Home Mechanical Ventilation (HMV) Support Registration System was established in 2023.
- This registry aims to track and support pediatric patients requiring HMV.
Purpose of the Study:
- To present the initial findings from Turkey's first national registry for pediatric HMV patients.
- To analyze epidemiological and demographic data of children receiving HMV.
- To identify key characteristics and challenges within this patient population.
Main Methods:
- A cross-sectional study design was employed.
- Data were collected from the national HMV registry, including 952 patients from 23 centers.
- Epidemiological and demographic data were compared between invasive ventilation (IV) and non-invasive ventilation (NIV) groups.
Main Results:
- The median age of patients was 6.0 years, with 51.1% receiving IV support.
- Significant differences were observed in age, nutrition, mobility, and education between IV and NIV subgroups.
- Neuromuscular diseases, particularly spinal muscular atrophy (15.7%), were the most common diagnoses.
- A high percentage of caregivers received formal HMV training (78.7% NIV, 93.8% IV).
Conclusions:
- Turkey's pediatric HMV registry provides crucial insights into patient care.
- The system can help address mobility and education challenges for HMV patients.
- Collaboration with relevant ministries is essential for optimizing care.
- Further efforts are needed to achieve 100% caregiver training rates before discharge.
Background:
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 were obtained from the registry and compared between invasive ventilation (IV) and non-IV (NIV) groups.
Results:
The study included 952 patients registered from 23 centers with a median (interquartile range) 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.
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