Ventilation in Motor Neurone Disease (MND): what happens in practice

Introduction: Ventilation is well established in the treatment of patients with MND to improve both respiratory symptoms and life-expectancy. Aim: To review our ventilatory settings for patients with MND and their adherence to treatment in the pre-terminal stages of their condition. Method: Data was collected on all MND patients requiring home mechanical ventilation (HMV) for signs of ventilatory failure and receiving a prescription for HMV at the time of notification of death. Results: 49 patients (20 female) with MND receiving HMV died between Jan 2015-Dec 2016. 30 patients of bulbar onset and 3 patients were tracheostomy ventilated. The average age at death was 68±8 yrs following 10±2 months on HMV. Ventilatory settings are reported in Table 1. A fifth of patients were not using HMV at the time of death all had been started on HMV in the last 6 months. A correlation was observed between the time spent on ventilation and adherence to treatment (rs 0.4, p<0.01). The majority of patients died in a hospice (Figure 1). Conclusion: The prognosis of patients with MND requiring HMV is in line with the current literature. As MND progresses patients require more time on HMV. These data suggest that introducing HMV to patients at the first sign of respiratory symptoms may improve adherence to treatment. Figure 1