Background: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families.Methods: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life.Results: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to “live for the day” due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in ‘selective decision-making’ related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make ‘timely decisions’ as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often ‘defaulted’ to others, especially once capacity was lost. ‘Proactive decisions’, including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options.Conclusions: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

Tracheostomy ventilation (TV) can increase survival time for people living with motor neurone disease (MND); however, the use of TV varies between countries. Concerns regarding anticipated quality of life (QoL) are among the reasons given by healthcare professionals for not recommending this intervention, yet little is known about QoL in this context. This scoping review was conducted to examine the evidence on QoL for those with MND who use TV and family members involved in their care. Using the methodological guidance of the Joanna Briggs Institute, 23 papers were identified for inclusion, and findings were inductively analysed to identify key themes. We found that people living with MND tend to rate QoL post TV more positively than anticipated by healthcare professionals or family members. QoL was found to be related to positive relationships and activities the person could maintain. Feeling able to make a choice and an adequate level of financial resources were also important factors. Family members tended to experience lower QoL, associated with the uncertainty surrounding an emergency procedure and the complexity of subsequently required care. More evidence on QoL from the perspectives of people with MND who use TV is needed to support decision making and inform guidance.

Background: Transcutaneous CO₂ (TcCO₂) measurement is widely used in the diagnosis and monitoring of ventilatory failure. Robust data on the success rates of measurement is scant. We aimed to discern the factors affecting the success rate of TcCO₂ measurement in a regional LTV service. Methods: Patients undergoing TcCO₂ measurement between October 2019 and January 2022 were identified retrospectively. Notes were analysed for basic demographics, indications for TcCO₂ measurement, measurement outcome, device used (Radiometer TCM5 or Sentec, based on availability), setup (self, carer, or clinician), inpatient or domiciliary study, and number of TcCO₂ measurement attempts occurred. Statistical comparisons were made by Fisher’s exact test. Results: We identified 435 recording events on 288 patients, mean age of 53, and 56% were males. A total of 189 (66%) had a neuromuscular disorder (NMD). The commonest indications for TcCO₂ measurement were ‘assessing ventilatory failure’ (43%) in treatment-naïve patients and ‘adequacy of ventilation therapy due to persistent symptoms’ (26%) in those established on LTV. Over 80% of our recording events were applied by patients or their carers. Overall, TCM5 devices had statistically higher successful recording rates (197/268, 73.5%) than Sentec (100/165, 60.6%) [p = 0.0056]. In domiciliary studies, TCM5’s success rate of 187/253 (73.9%) versus Sentec’s 94/154 (61.0%) was significantly better [p = 0.0079]. The success rate of each measurement attempt ranged between 62.9 and 67.0%, with up to three attempts on each subject. Conclusions: Home TcCO₂ is helpful in managing those with respiratory failure. Repeating tests after initial failure of recording is worthwhile. There may be differences in performance across devices which warrants further study.

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Introduction: The FiO2 at altitude in commercial aircrafts is 0.16. A hypoxic challenge test (HCT) is typically conducted using nitrogen as the driving gas via a Venturi mask (8l/min flow, 24% mask). Patients who are dependent on long-term non-invasive ventilation (NIV), present a challenge for clinicians undertaking a HCT as the Venturi device cannot be used in an NIV circuit. Aim: To establish whether it is possible to conduct an HCT on individuals using NIV at the time of the test, and whether this provides an accurate simulation of the hypoxic conditions during flight. Methods: The bench test involved one healthy subject. Nitrogen was added at the ventilator outlet. Flow of nitrogen was increased incrementally from 4 l/min to the maximum of 15 l/min. Maximum and mean gas flow and FiO2 were measured. NIV settings were adjusted incrementally between 5cmH2O and 20cmH2O. Oxygen saturations and transcutaneous CO2 were monitored. Results: We were able to deliver an FiO2 of 0.16 via NIV at all pressures and gas flows. Inspiratory flow increased as ventilatory pressures increased which diluted the nitrogen delivered and increased the FiO2. Desaturation only occurred with low FiO2 during NIV with low ventilatory pressures. Discussion: We have demonstrated that we can replicate the FiO2 during commercial flights (0.16) in a healthy subject receiving NIV across a range of pressures. This informs clinical recommendations about flying with NIV but without oxygen. Conclusion: We have shown how to replicate an HCT during NIV. Patients receiving long term NIV should be assessed individually and the FiO2 measured. It may be preferable to use NIV rather than unopposed oxygen.

Background/Objectives: Long-term ventilation (LTV) is a widely used treatment for the management of patients with chronic respiratory failure. As use increases, it generates further questions about aspects of care. One issue is the potential risk of contamination within the device itself and the potential risk of respiratory tract infections in a subsequent user. Using an observational cross-sectional study design, the primary objective of this study was to identify whether airborne bacterial and fungal pathogens are present within a NIPPY 3+ (Breas Medical Ltd., Stratford Upon Avon, UK) room air ventilator following use in a community setting. Methods: Microbiological samples in the form of one single charcoal swab were taken from two specified areas of the device’s internal airflow pathway. Results: A total of 243 ventilators were sampled. A total of 215 ventilators with complete data collection were included in the study. A total of 84 (39%) were identified as having no growth and 131 (61%) were positive for bacterial and/or fungal growth. Overall, 307 organisms were grown from 131 ventilators ranging from 1 to 6 organisms per swab. Of the 215 ventilators screened, 15 (7%) grew organisms considered to be pathogenic. Well-established human pathogens were considered as ‘potentially pathogenic’ in this study due to the limitation of not obtaining patient-specific data, meaning host–pathogen interaction could not be determined. Of these, 14 grew one pathogenic organism and 1 grew four distinct pathogens. This is the largest study to date exploring the potential presence of airborne pathogens in room air ventilators. We have demonstrated that 61% of these devices were positive for bacterial or fungal growth and 7% were pathogenic. Pathogenic organisms included Pseudomonas aeruginosa, Staphylococcus aureus and Aspergillus sp. Although the growth of pathogenic organisms was relatively rare, there are important potential adverse clinical outcomes in patients with diseases commonly treated by LTV services. Conclusions: We have shown that the contamination of devices is rare, but, in 7%, there is contamination with potentially pathogenic organisms, which, if proven to be transferred between patients, could be a cause of worse patient outcomes.