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Table 1 Summary of information gathered

From: Transition to adult care in young people with neuromuscular disease on non-invasive ventilation

Date of birth
Sex
Ethnicity
Date of evaluation
BMI
Diagnosis
Overall admissions and admissions for sleep assessment during the last 12 months
Acute respiratory exacerbations during the last 12 months
Chronic colonization (specify pathogens)
Antibiotic prophylaxis
Feeding
Physiotherapy: N physio session/week, use of physio aids (cough assistance, VEST, others)
Pulmonary function evaluation: FVC Z score
Age at initiation NIV
Last sleep study: ODI 4%, mean SpO2, mean CO2%, time overnight spent CO2 > 6.5 kPa, % time overnight spent SpO2 < 90%, AHI
Time passed since previous sleep study (months)
Mode of ventilation: and main NIV settings (IPAP, EPAP)
Interface mask
Time passed depending on ventilator assistance
Multidisciplinary assessment
Comorbidities
  1. BMI Body Mass Index, VEST VEST airway clearance system, FVC Forced Vital Capacity, ODI Oxygen Desaturation Index, AHI Apnea-Hypopnea Index, IPAP Inspiratory Positive Airway Pressure, EPAP Expiratory Positive Airway Pressure