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. 2024 Oct;39(10):1784-1798.
doi: 10.1002/mds.29961. Epub 2024 Aug 5.

Pain in Multiple System Atrophy: A Community-Based Survey

Nicole Campese  1 , Georg Göbel  2 , Julia Wanschitz  1 , Andreas Schlager  3 , Bianca Caliò  1 , Fabian Leys  1 , Pam Bower  4 , Larry Kellerman  4 , Laura Zamarian  1 , Kirsty Bannister  5 , Kallol Ray Chaudhuri  5   6 , Anette Schrag  7 , Roy Freeman  8 , Horacio Kaufmann  9 , Roberta Granata  1 , Stefan Kiechl  1 , Werner Poewe  1 , Klaus Seppi  1 , Gregor Wenning #  1 , Alessandra Fanciulli  1
Affiliations

Pain in Multiple System Atrophy: A Community-Based Survey

Nicole Campese et al. Mov Disord. 2024 Oct.

Abstract

Background: Pain 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.

Objective: This study aimed at assessing the prevalence, characteristics, and current treatment strategies for pain in MSA.

Methods: A 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.

Results: We 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.

Conclusions: Pain 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.

Keywords: multiple system atrophy; non‐motor symptoms; pain; quality of life.

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