JMIR Publications

ABSTRACT

Background:

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder that substantially impairs patients’ health-related quality of life through widespread motor, autonomic, and non-motor dysfunction. Currently, there is limited literature documenting the experiences of patients with MSA and their caregivers.

Objective:

This study conducted a qualitative investigation of social media data to explore the experiences and perspectives on diagnosis, unmet needs, caregiver burden, and treatment perceptions of patients and caregivers navigating the MSA journey.

Methods:

A non-interventional retrospective analysis of social media data of patients with MSA and their caregivers was conducted. Relevant social media posts published between January 2016 to September 2023 were collected from the United States, the United Kingdom, France, Germany, Italy, Japan, and Spain using specific keywords. Brandwatch® scanned publicly available sources (Twitter, Healthunlocked.Com, Reddit, Ameblo.Jp, Instagram etc.) to retrieve messages containing the search keywords. All data were analyzed using descriptive statistics.

Results:

A total of 7,241 social media posts from 4,102 users across 342 sources were analyzed. Conversations were predominantly female led (n = 3,192, 77.8%) with most users (1,658, 40.4%) belonging to ≥ 60 years age group. Most messages included discussions about family dynamics and support strategies (n = 2,201, 30.4%) followed by messages describing their experience with MSA, including symptom presentation, disease progression, and diagnostic journeys (n = 1,282, 17.7%). The most mentioned challenges and unmet needs were for information/experiences/community support (n = 1,232, 27.8%), disease progression/worsening/complications (n = 707, 16.0%), and challenges in diagnosis and understanding the disease (n = 645, 14.6%). Treatment perception analysis revealed that 42.5% (n = 364) of the mentions were neutral, 26.4% (n = 226) reflected negative perceptions, 20.3% (n = 174) conveyed positive perceptions, and 10.8% (n = 93) showed mixed sentiments. Approximately half of the messages (n = 3,968, 54.8%) mentioned at least one element of the healthcare pathway. The diagnostic journey for MSA was typically initiated when the patients noticed early symptoms and consulted their primary care physician for initial evaluation. Diagnostic delays ranged from 4 to 10 years, with some patients reporting symptom onset as early as 20 years prior to diagnosis. Following diagnosis, patients were commonly prescribed medications such as Levodopa, carbidopa/levodopa (Sinemet), or levodopa/benserazide (Madopar). Non-pharmacological interventions such as physical exercise, rehabilitation, and dietary modifications also played a key role in symptom management.

Conclusions:

This study offers critical insights into the lived experience of patients with MSA and their caregivers, revealing significant diagnostic delays and persistent gaps in treatment and support. The findings underscore an urgent need for improved early detection strategies, comprehensive multidisciplinary care, and robust community support systems to improve disease management.