Data Collection
Demographic, clinical, and technology-related data were collected at: 1)
the time of NIV initiation; 2) the initial follow-up visit within the
first 12 months from NIV initiation; 3) the most recent follow-up visit
after 12 months from NIV initiation (and a minimum of 3 months apart
from the initial follow-up visit). Data was stored in an electronic
REDCap database18.
Baseline demographic data collection included age, sex, and site of NIV
initiation. Clinical data collection included specific underlying
disease conditions, co-morbidities (defined as any additional diagnosis
aside from the primary underlying diagnosis as per previous
definition)19, additional technologies (e.g. oxygen
therapy, V-P shunt, nasogastric/gastric-tube feeding, wheelchair),
history of previous upper airway surgeries or/and additional major
surgeries (e.g. heart surgery, neurosurgery, orthognathic surgery,
spinal surgery). Technology-related data collected included NIV type
(CPAP, BPAP or auto-PAP), mask type (nasal, oro-nasal, or other (total
face mask or nasal pillow)), and trigger for NIV use (electively without
polysomnography (PSG); electively with PSG; due to acute illness;
other), date of NIV initiation and overall duration of NIV use.
Follow-up data included the total number of NIV-related complications
reported by patients/caregivers.