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

Study Overview
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Brief Summary
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Home ventilation in children, invasive or non invasiv,e is an interesting treatment for different disease which cause chronic respiratory impairement. The aim of this treatment is to support alveolar hypoventilation. Concerned diseases are : neuro-muscular disease, upper airways pathologies, whest wall or lung pathologies, central control ventilation disease. Prevalence of home children ventilation is in augmentation in France. The last national study in 2021 about infants show a prevalence of 9.3/100 000. Advantages with home children ventilation in addition of improvement of survey, we can observe improvement of quality of life and improvement of the quality of their sleep. Quality of life is a thematic less studying. Last studies show an impairment of quality of life in all thematics compare to children with no disease but also with infants whith chronic diseases. This study were about few numbers of patients. The aim of our study is to evaluate the quality of life and the quality of sleep in children with home ventilation to complete the actual littérature to improve the respiratory care of this population.

Official Title
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Quality of Life and Quality of Sleep Studies in Children With Home Care Ventilation in Two Regions of France Pays de Loire and Bretagne

Conditions
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Quality of Life, Non Invasive Ventilation

Intervention / Treatment
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* Other: Quality of life and sleep questionnaire


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Child aged 6 months to 17 years treated with non-invasive ventilation at home for at least 1 month Follow-up in one of the five centers participating in the study (Angers, Nantes, Le Mans, Rennes and Brest) Informed consent form signed by both parents, or holder of parental authority, for the participation of their child To be affiliated or beneficiary of social security Exclusion Criteria: Parents with poor command of the French language, implying not being able to complete the various questionnaires Refusal of the child to participate in the study

Ages Eligible for Study
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Minimum Age: 6 Months
Maximum Age: 17 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Other
Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Children with home ventilation<br> | Other: Quality of life and sleep questionnaire<br>* Evaluation of quality of life and quality of sleep by questionnaires<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of life in children with home care ventilation | The quality of life of this population is assessed using the generic PedsQL 4.0 score. The questions are classified according to different categories regardless of age: physical capacity, emotional functioning, social relationships and schooling, or for children under 2 years old, relationship life and cognitive functioning. The evaluation relates to the past month. The questionnaire presents different questions depending on the age group | 30 months |