Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs.

Abstract

Background: Motor Neurone Disease (MND) is a rare but debilitating illness with incomplete evidence available regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs (1). Objective(s): This study aimed to identify the symptom prevalence and severity experienced by patients with MND. Secondary objectives were to examine differences in symptom burden and clusters according to MND phenotype, functional status, palliative care provision and those in their last months of life. Method(s): This was a point prevalence study assessing patientreported symptoms using a modified IPOS-Neuro assessment tool, incorporating 41 symptom items. This study was conducted at the State-wide Progressive Neurological Disease Service at Calvary Healthcare Bethlehem in Melbourne, Australia. Patients with MND were invited to participate once during the recruitment period, from March to December 2021. Result(s): 102 Patients participated, the majority diagnosed with lumber-onset (30.4%), bulbar-onset (28.4%) and cervicalonset (25.5%) MND phenotypes. Patients experienced a median of 17 symptoms (range 2-32) with a median of 3 symptoms rated as severe/overwhelming (range 0-13). Fatigue was the commonest symptom (84.0%), followed by motor and functional symptoms, including symptoms relating to sex. Differences in symptom clusters occurred according to differing MND phenotypes. Patients had a higher number of severe/overwhelming symptoms if they were accessing palliative care services (p=0.005), in their last 6 months of life (p=0.003) and experiencing moderate or severe functional impairment (p<0.001). Discussion(s): Patients with MND report high symptom burden. A validated MND-specific symptom assessment tool is needed to accurately assess patients' symptoms, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.