Objective: To estimate prevalence of pain in people with multiple system atrophy (MSA).To estimate prevalence of pain in people with multiple system atrophy (MSA).

Background: Pain belongs to the spectrum of non-motor symptoms of MSA. Although frequently reported, its prevalence, characteristics and risk factors remain poorly characterized in this disorder, with no tailored management strategies available.

Method: To collect information on pain in MSA, we first performed a systematic literature review. We screened the PubMED, Cochrane and Web of Science databases until September, 30th

2022, by using the following keywords combinations: “pain” AND “multiple system atrophy” OR “MSA”, olivopontocerebellar atrophy” OR “OPCA”, “striatonigral degeneration” OR “SND”, “Shy Drager”, “atypical parkinsonism”. Only papers written in English, reporting at least information on pain prevalence in people with MSA were included. Additional eligible papers were retrieved by reference cross-check.

Results: Seven-hundred records were identified, 16 were included in the qualitative synthesis and 14 retained for final analysis, pooling data from 1319 individuals with MSA. Among them, 60% (n=797) reported pain, with prevalence data ranging from 40% to 88% across studies. Pain was reported by 67% of people with MSA-Parkinson (MSA-p) and by 47% of MSA-cerebellar subtype (MSA-c) (p<0.001). According to two studies, only 50% of the individuals with MSA reporting pain had received targeted treatment.

Conclusion: Pain is frequent in individuals with MSA but remains under-recognized and undertreated to date. Prevalence, classification systems, putative risk factors and assessment tools significantly differ across the few available studies. To fill this knowledge gap, in February 2023 we launched an observational web-based survey. Based on the information collected by the systematic literature review and on inputs from MSA patients and caregivers, we developed two different questionnaires exploring pain features, putative MSA-dependent and independent risk-factors, management strategies and the impact of pain on patients’ and caregivers’ burden and quality of life. We anticipate that a better characterization of pain in people with MSA and understanding its impact on the quality of life of individuals with MSA and their caregivers will pave the way for improved assessment and management strategies.

Preliminary results of this study have been presented at 2022 EFAS meeting.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/pain-in-people-with-multiple-system-atrophy/