Abstract

Background: Progressive Supranuclear Palsy (PSP) and Multiple System Atrophy (MSA) are neurodegenerative disorders with disabling morbidities and premature death. Variable illness trajectories make the timing for initiating neuropalliative care unclear. This scoping review aims to identify milestones relevant to survival and neuropalliative care in PSP and MSA. Methods: A systematic literature search was performed in Medline and EMBASE databases to identify publications investigating predictors of survival in PSP and MSA. Titles and abstracts of 2091 articles were independently screened by two reviewers and 22 research studies published after 2010 were included. Results were qualitatively combined to suggest triggers for targeted palliative care throughout the disease trajectory. Results: ‘Milestones’ are well documented, clinically relevant disease points prompting further care. Important milestones include frequent falls, cognitive impairment, severe dysarthria, severe dysphagia, wheelchair dependence, urinary catheterisation, and institutionalization. Early disease milestones include falls and cognitive impairment in PSP, and urinary catherization and falls in MSA. Time from milestone to death is variable. Conclusions: Milestones can be used to follow disease progression and help predict survival. We propose a framework in which milestones are used as triggers for targeted neuropalliative care interventions including the early initiation of a primary palliative care or referral to specialised palliative care services.

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