Objective: To report patient and/ or caregiver perspective in Multiple System Atrophy (MSA).

Background: The majority of literature on MSA’s natural history comes from single center studies or region specific cohorts. As such, site or region independent MSA-specific patient perspectives, integral to patient-centered care, may not have been adequately captured.

Methods: Information on demographics, clinical features and management was collected as part of a patient survey made available online in March 2014. Permission to use this information was granted by the creator of the survey (a patient with MSA) for the purpose of research. As it is a publically available data with no identifiable PHI, no IRB was considered necessary for its use (1).

Results: A total of 852 participants responded to the survey. While 37% of responders were MSA patients, 63% were caregivers. Males comprised 58.9% of all responders. The majority of responders were from North America with some from Asia, Africa, Europe and Australia. Approximately 40.2% responders reported their age of diagnosis between 51-60 years, while 34.7% were diagnosed between 61-70 years. Approximately 45% reported their first MSA-attributable symptoms between 51-60 years of age, while 24% reported experiencing them between 41-50 years of age. MSA Parkinsonian subtype was the diagnosis in 27.5%, with 43.4% reporting the cerebellar subtype. It took greater than 2 years for 44% of patients to be given a diagnosis of MSA with consultation with 3 or more neurologists required by 57% of patients. Most commonly reported clinical manifestations included difficulty walking (92.3%), impaired balance (93.7%), impaired fine motor skills (80%), falls (79.1%), impaired bladder control (71.2%) and unstable blood pressure (68.5%). For clinical care, 48% of MSA patients required 3 or more visits with their doctor annually. However, only 14% of the patients lived 8 years or more after a diagnosis of MSA, with 59% of respondents reporting respiratory infection or failure as cause of death. From a total of 852 responders, 11.9% reported participating in clinical research about MSA with 21.8% reporting the patients donating their brain for research.

Conclusions: This is the first time a patient-initiated, patient-organized database on MSA patient perspectives have been analyzed and reported. Such data is central to good patient care and patient advocacy efforts. Early diagnosis and symptom management is key to good quality of life in MSA patients.

References: 1. Moreno MA, Goniu N, Moreno PS, Diekema D. Ethics of Social Media Research: Common Concerns and Practical Considerations. Cyberpsychology, Behavior and Social Networking. 2013;16(9):708-713. doi:10.1089/cyber.2012.0334.

« Back to 2018 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-perspective-in-multiple-system-atrophy/