Document resource
Background Chronic respiratory failure (CRF) due to Motor Neurone Disease (MND) presents a significant clinical challenge due to variability in speed of the progressive respiratory muscle weakness. Non-invasive ventilation (NIV) may improve survival and quality of life but requires timely specialised support to initiate effectively. Traditional inpatient pathways can delay treatment. An outpatient NIV set-up service (OPSUS) has been established to provide structured assessment and ventilation initiation for patients with respiratory failure including a cohort of patients with MND. It provides joint multidisciplinary assessments by a Respiratory Physician, Clinical Nurse Specialist, and Senior Physiotherapists. Comprehensive evaluation incorporates arterial blood gases, overnight oximetry (prior to appointment) and measures of respiratory muscle function (FVC, SNIP). NIV initiation is protocolised, with outpatient titration using pressure control or pressure support modes based on individual patient need. Patients receive a phone call 2 weeks after set up to troubleshoot and aid adherence.Methods We sought to characterise the MND cohort seen via the OPSUS pathway at a tertiary ventilation unit between January 2024 and May 2025. Clinical characteristics, and adherence outcomes were assessed.Results Between January 2024 to May 2025, 55 MND patients attended OPSUS; (Age mean 69 ± 7.7 years), 57% female). Median time from referral to first appointment was 27 days (IQR 9 – 51 days). 37 (67%) were set-up on NIV (16 pressure control mode, 21 pressure support mode). Baseline characteristics are provided in table 1. 13 of NIV patients (36%) were electively admitted within 3 months of set-up, 4 (11%) for respiratory review and 9 (24%) for PEG assessment. At last follow up (median time to follow up 111 days (IQR 33–209)), 24/35 (68.5%) patients had adherence at >4 hours per 24 hours. The service enabled prompt identification of nocturnal hypoventilation and hypercapnia, facilitating timely intervention through optimised mask fitting, patient education and adherence strategies.Abstract P235 Table 1Characteristics of referrals at baseline for all MND patients assessed and those set up on NIV with follow up data where available. Data are presented as n (%), median (IQR) or mean (SD). Oximetry data prior to appointment available for 24 patients (44%)Conclusion Outpatient NIV set-up constitutes an effective, multidisciplinary outpatient model for managing chronic respiratory failure in MND patients, achieving high levels of NIV adherence while reducing the demand for inpatient initiation.