Palliative care needs and utilisation of specialist services for people diagnosed with motor neuron disease: a national population-based study

Introduction There is a growing emphasis on the importance of the availability of specialist palliative care for people with motor neuron disease (MND). However, the palliative care needs of this population and the utilisation of different specialist services remain poorly defined.Objectives To (1) describe clinical characteristics, symptom burden and functional levels of patients dying with MND on their admission to palliative care services; (2) determine factors associated with receiving inpatient or community palliative care services.Design An observational study based on point-of-care assessment data from the Australian Palliative Care Outcomes Collaboration.Participants A total of 1308 patients who received palliative care principally because of MND between 1 January 2013 and 31 December 2020.Measures Five validated clinical instruments were used to assess each individual's function, distress from symptoms, symptom severity and urgency and acuity of their condition.Results Most patients with MND had no or mild symptom distress, but experienced a high degree of functional impairment. Patients who required 'two assistants for full care' relative to those who were 'independent' (OR=11.53, 95% CI: 4.87 to 27.26) and those in 'unstable' relative to 'stable' palliative care phases (OR=16.74, 95% CI: 7.73 to 36.24) were more likely to use inpatient versus community-based palliative care. Associations between the use of different palliative care services and levels of symptom distress were not observed in this study.Conclusions Patients with MND were more likely to need assistance for decreased function and activities of daily living, rather than symptom management. This population could have potentially been cared for in the palliative phase in a community setting if greater access to supportive services were available in this context.