Pain in Multiple System Atrophy: A Community-Based Survey

Nicole Campese; Georg Göbel; Julia Wanschitz; Andreas Schlager; Bianca Caliò; Fabian Leys; Pam Bower; Larry Kellerman; Laura Zamarian; Kirsty Bannister; Kallol Ray Chaudhuri; Anette Schrag; Roy Freeman; Horacio Kaufmann; Roberta Granata; Stefan Kiechl; Werner Poewe; Klaus Seppi; Gregor Wenning; Alessandra Fanciulli

doi:10.1002/mds.29961

Pain in Multiple System Atrophy: A Community-Based Survey

Nicole Campese, Georg Göbel, Julia Wanschitz, Andreas Schlager, Bianca Caliò, Fabian Leys, Pam Bower, Larry Kellerman, Laura Zamarian, Kirsty Bannister, Kallol Ray Chaudhuri, Anette Schrag, Roy Freeman, Horacio Kaufmann, Roberta Granata, Stefan Kiechl, Werner Poewe, Klaus Seppi, Gregor Wenning, Alessandra Fanciulli^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

1 Citation (Scopus)

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.

Original language	English
Pages (from-to)	1784-1798
Number of pages	15
Journal	Movement Disorders
Volume	39
Issue number	10
DOIs	https://doi.org/10.1002/mds.29961
Publication status	Published - Oct 2024

Keywords

multiple system atrophy
non-motor symptoms
pain
quality of life

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10.1002/mds.29961

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Campese, N., Göbel, G., Wanschitz, J., Schlager, A., Caliò, B., Leys, F., Bower, P., Kellerman, L., Zamarian, L., Bannister, K., Chaudhuri, K. R., Schrag, A., Freeman, R., Kaufmann, H., Granata, R., Kiechl, S., Poewe, W., Seppi, K., Wenning, G., & Fanciulli, A. (2024). Pain in Multiple System Atrophy: A Community-Based Survey. Movement Disorders, 39(10), 1784-1798. https://doi.org/10.1002/mds.29961

@article{7abe5c125a0f46b09c5b8aaa36ad040e,

title = "Pain in Multiple System Atrophy: A Community-Based Survey",

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.",

keywords = "multiple system atrophy, non-motor symptoms, pain, quality of life",

author = "Nicole Campese and Georg G{\"o}bel and Julia Wanschitz and Andreas Schlager and Bianca Cali{\`o} and Fabian Leys and Pam Bower and Larry Kellerman and Laura Zamarian and Kirsty Bannister and Chaudhuri, {Kallol Ray} and Anette Schrag and Roy Freeman and Horacio Kaufmann and Roberta Granata and Stefan Kiechl and Werner Poewe and Klaus Seppi and Gregor Wenning and Alessandra Fanciulli",

note = "Publisher Copyright: {\textcopyright} 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.",

year = "2024",

month = oct,

doi = "10.1002/mds.29961",

language = "English",

volume = "39",

pages = "1784--1798",

journal = "Movement Disorders",

issn = "0885-3185",

publisher = "Wiley",

number = "10",

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Campese, N, Göbel, G, Wanschitz, J, Schlager, A, Caliò, B, Leys, F, Bower, P, Kellerman, L, Zamarian, L, Bannister, K , Chaudhuri, KR, Schrag, A, Freeman, R, Kaufmann, H, Granata, R, Kiechl, S, Poewe, W, Seppi, K, Wenning, G & Fanciulli, A 2024, 'Pain in Multiple System Atrophy: A Community-Based Survey', Movement Disorders, vol. 39, no. 10, pp. 1784-1798. https://doi.org/10.1002/mds.29961

TY - JOUR

T1 - Pain in Multiple System Atrophy

T2 - A Community-Based Survey

AU - Campese, Nicole

AU - Göbel, Georg

AU - Wanschitz, Julia

AU - Schlager, Andreas

AU - Caliò, Bianca

AU - Leys, Fabian

AU - Bower, Pam

AU - Kellerman, Larry

AU - Zamarian, Laura

AU - Bannister, Kirsty

AU - Chaudhuri, Kallol Ray

AU - Schrag, Anette

AU - Freeman, Roy

AU - Kaufmann, Horacio

AU - Granata, Roberta

AU - Kiechl, Stefan

AU - Poewe, Werner

AU - Seppi, Klaus

AU - Wenning, Gregor

AU - Fanciulli, Alessandra

PY - 2024/10

Y1 - 2024/10

N2 - 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.

AB - 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.

KW - multiple system atrophy

KW - non-motor symptoms

KW - pain

KW - quality of life

UR - http://www.scopus.com/inward/record.url?scp=85200319544&partnerID=8YFLogxK

U2 - 10.1002/mds.29961

DO - 10.1002/mds.29961

M3 - Article

C2 - 39101334

AN - SCOPUS:85200319544

SN - 0885-3185

VL - 39

SP - 1784

EP - 1798

JO - Movement Disorders

JF - Movement Disorders

IS - 10

ER -

Pain in Multiple System Atrophy: A Community-Based Survey

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Keywords

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