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 |