dataMSA and Mayo Clinic
Great News in Research Partnership
Researchers at Mayo Clinic have analyzed the data from the dataMSA databases and have created an abstract which will be submitted it for presentation at the 2023 American Autonomic Society Symposium.
Characteristics of Multiple System Atrophy: Perspectives from Patients and Caregivers
Negin Badihian, M.D.1, Elizabeth A. Coon, M.D.1, Mariana D Suarez1, Bill Sydnor, Phillip A. Low, M.D.1, Wolfgang Singer, M.D.1
1 Department of Neurology, Mayo Clinic, Rochester, MN
Objectives: To evaluate clinical characteristics of multiple system atrophy (MSA) from the perspectives of patients and caregivers.
Background: MSA diagnosis and management are often challenging which may be due to differences between physicians’ expectations and patients’ experience of MSA. Literature on the MSA characteristics from patients’ perspectives is scarce.
Methods: An online survey was developed by a patient diagnosed with MSA and individuals worldwide with a diagnosis of MSA were invited to participate via social media platforms. The survey was conducted at 2 time points: March 2014-March 2019 and March 2020-September 2020. Sociodemographic information and disease clinical characteristics were reported by either the patient or caregiver. The survey designer provided the collected data to our team for subsequent evaluations and analysis.
Results: The total number of responders was 743 with the highest number of participants from the United States (Southeast and Midwest regions) and Oceania. Most of the patients were male (58.7%) and the most common reported age of onset was 51-60 years (44.6%). MSA with predominant cerebellar features (MSA-C) was the most common reported subtype (44%); 28.3% of patients were uncertain about their MSA subtype. Imbalance/falls/gait difficulty (75.8%), bladder dysfunction (30.4%), and impaired dexterity (27.7%) were the most common initial MSA symptoms. Comparing MSA-C and MSA with predominant parkinsonism features (MSA-P) regarding initial presentation, patients with MSA-C had higher frequencies of imbalance/falls/gait difficulty, and dysarthria (p=0.001, and p=0.010, respectively); while those with MSA-P experienced higher frequencies of dystonia (p=0.002), tremor (p<0.001), cognitive impairment (p=0.011), and peripheral neuropathy (p=0.002). The most reported events exacerbating MSA symptoms were inadequate rest/excessive physical activity (76.2%), psychological stressors (56.6%), and environmental stressors (50.4%). The most effective strategies to improve symptoms included physical therapy/occupational therapy (61.1%) and physical activity (58.3%). Cyclic pattern of symptom worsening was reported in 34.2%; with a frequency of ≥1 time/week in 42.5% of cases. Time from MSA diagnosis to death was available for 105 patients; 70.4% were deceased within 5 years from diagnosis. Respiratory complications were the most common cause of death (82.7%).
Conclusion: This study provides valuable insights into MSA characteristics from the perspectives of patients and their caregivers.
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