NIV@Home Pilot Randomised Controlled Trial Dataset

This dataset contains de identified participant level data from the NIV@Home pilot randomised controlled trial, which compared in home noninvasive ventilation (NIV) initiation with remote follow up against a single day hospital admission NIV initiation model in adults with neuromuscular disease, predominantly motor neurone disease (MND). The trial assessed feasibility, adherence to NIV over 12 weeks, health related quality of life, symptoms, carer burden, and participants' experiences of NIV initiation. Recruitment occurred between August 2020 and August 2021 during the COVID 19 pandemic, which influenced referral patterns, follow up, and hospital access.

The dataset includes demographics, respiratory function, comorbidities, baseline assessments, randomisation strata, NIV settings, usage data (objective ventilator downloads), follow up contact logs, qualitative interview summaries, and outcome measures evaluating feasibility and adherence. The dataset supports evaluation of alternative models of NIV initiation and contributes to the evidence base for home based respiratory care in neuromuscular disease.

Publication DOI: 10.1080/21678421.2024.2416668