Pain in Multiple System Atrophy: A Community‐Based Survey

Abstract

BackgroundPain is a frequent yet poorly characterized symptom of multiple system atrophy (MSA). Understanding the factors influencing pain and its burden is crucial for improving the symptomatic treatment and quality of life of MSA individuals.ObjectiveThis study aimed at assessing the prevalence, characteristics, and current treatment strategies for pain in MSA.MethodsA community‐based, online survey was conducted from February to May 2023. Invitations were extended to MSA individuals and informal MSA caregivers through patient advocacies and social media.ResultsWe included 190 persons with MSA and 114 caregivers. Eighty‐seven percent of MSA individuals reported pain, which was more prevalent among women (odds ratio [OR]: 6.38 [95% confidence interval, CI: 1.27–32.08], P = 0.025) and low‐income groups (OR: 5.02 [95% CI: 1.32–19.08], P = 0.018). Neck and shoulders (58%), back (45%), and legs (45%) were mostly affected. In the neck and shoulders, pain was associated with MSA core features, like orthostatic intolerance (OR: 4.80 [95% CI: 1.92–12.02], P = 0.001) and antecollis (OR: 3.24 [95% CI: 1.54–6.82], P = 0.002). Seventy‐six percent of individuals experiencing pain received treatment, mostly nonsteroidal anti‐inflammatory drugs (47%), acetaminophen (39%), and opioids (28%). Only 53% of respondents reported at least partial satisfaction with their current pain management. Pain mostly impacted work, household activities, and hobbies of MSA individuals, and caregivers' social activities.ConclusionsPain is more prevalent than previously reported in MSA and particularly affects women and low‐income groups. Despite its frequency, pain management remains suboptimal, highlighting an urgent therapeutic need, likely entailing an optimized management of MSA core motor and non‐motor features. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.