Airway Clearance Impairment, Children, Only, Cough, Neuromuscular Diseases
Conditions
Keywords
Airway management, Cough, Neuromuscular diseases, Pediatrics, Mechanical insufflation-exsufflation
Brief summary
The study investigates the prevalence and use of mechanical insufflation - exsufflation (MI-E) in children with Neuromuscular disorders (NMD) in Norway. The NMD related prevalence of MIE use in Norway will be described and possible regional differences regarding use will be assessed.
Detailed description
Neuromuscular diseases (NMD) in children are severe, possibly life-threatening orphan conditions. Respiratory tract infections and lung complications are the main causes of increased morbidity and mortality. The use of mechanical cough augmentation with insufflation-exsufflation (MIE) is a strategy to treat and prevent. Possible major benefits are described, but optimal settings for best efficacy and comfort in children are not established. The main objective is to determine the prevalence and use of MIE among children with NMD in Norway. All children with NMD \< 18 years which has received a machine for MI-E will be invited to participate in the study. The participants will be asked to complete two questionnaires. In addition will information from the data card in the MI-E machines give information about use. The information will be linked to the National register for Long term mechanical ventilation.
Interventions
None listed
Sponsors
University Hospital of North Norway
St. Olavs Hospital
Haukeland University Hospital
Helse Stavanger HF
Sorlandet Hospital HF
Oslo University Hospital
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
No minimum to 18 Years
Healthy volunteers
No
Inclusion criteria
, * Received a MI-E device * Neuromuscular disease * \< 18 years
Exclusion criteria
\- None
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Residency | At one point (1 day) | Name of county |
| Indication for use | At one point (1 day) | Prevention or treatment purposes from questionnaire |
| Diagnosis | 01.01.2018 | International Classification of Diseases - 10 diagnosis |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Health related quality of life | One time at completion of questionaire | The DISABKIDS Chronic Generic Module (DCGM-37) is a questionnaire measuring general health-related quality of life (HRQoL) and the level of distress caused by a chronic disease at 3 domains (mental, social and physical) in 6 dimensions: Independence, Emotion, Social inclusion, Social exclusion, Limitation and Treatment. Each item is scored on a five-point Likert scale which indicates behavior or feelings as 1 = never, 2 = seldom, 3 = quite often, 4 = very often and 5 = always. There is one form to be filled in by children 8 to 18 years of age, and one form by their parents. The sum of scores within each dimension makes up the raw score, which is transformed linearly into a score ranging from 0 to 100. The scores are added and further transformed into a total HRQOL score with a range 0 to 100 with higher scores indicating higher HRQOL. |
| Settings in use | One time at completion of questionaire | Recorded from data card in MIE machine |
| Opinion on treatment | One time at completion of questionaire | A purpose made questionnaire including questions with predefined categorical data in no order, and 2 questions using a Visual Analog Scale 0-10 to score perceived benefit of the treatment where 0 indicates not important at all and 10 indicates very important. |
Countries
Norway
Outcome results
None listed