Studying Quality of Life and Sleep in Children Using Home Ventilation A Study in the West of France Pays de Loire and Bretagne Regions

What this Trial Is About

Researchers are studying children who use home ventilation, either invasive or non-invasive, to support breathing difficulties caused by various diseases such as neuromuscular disorders, upper airway problems, chest wall or lung diseases, and central ventilation control issues. The study aims to evaluate the quality of life and sleep in these children to add to existing knowledge and improve respiratory care for this population. Home ventilation use in children is increasing in France, with recent data showing a prevalence of 9.3 per 100,000 infants. Participants in this study will be children aged between 6 months and 17 years who have been treated with non-invasive ventilation at home for at least one month. The study involves completing questionnaires that assess quality of life and quality of sleep. The study is conducted in five centers across France and focuses on monitoring these outcomes over a 30-month period. During the study, children and their families will complete quality of life and sleep questionnaires at regular intervals to help researchers understand the impact of home ventilation. The main outcome measured is the quality of life over 30 months. Parents must consent for their child to participate, and children who refuse participation are excluded. The study includes follow-up visits at participating centers and aims to provide valuable information on the well-being of children using home ventilation.

Quality of Life and Quality of Sleep Studies in Children With Home Care Ventilation in the West of France