Mackaleigh Levine1, Devora Shapiro2, Anna Hayburn1, Christopher Cantrell3, Robert Wilson1
1Cleveland Clinic, Cleveland Clinic Neuromuscular Center, 2Ohio University Heritage College of Osteopathic Medicine, 3Cleveland Clinic Lerner College of Medicine
Objective:
To better understand why some POTS patients do well incorporating exercise into their treatment and what barriers challenge others.
Background:
Postural Orthostatic Tachycardia Syndrome (POTS) is a chronic autonomic condition in which patients experience orthostatic intolerance and abnormal tachycardia. Exercise is often recommended as a self-care modification, but many POTS patients face barriers optimizing exercise.
Design/Methods:
We sent an IRB-approved survey in the patient e-messaging application (MyChart) to 465 patients who have participated in a Shared Medical Appointment (SMA) by Zoom within the tertiary care center between March 2022 – October 2022. Variables considered in this survey include demographics, gender, body identity, symptoms that interfere with exercise, exercise tolerance, exercise prescription, attitude towards exercise, and exercise resource accessibility.
Results:
Of the 465 patients, 286 responses were formally submitted for consideration (61%). 75% of patients have had exercise recommended as a lifestyle modification. 77% of patients exercised regularly before experiencing POTS symptoms. 61% of patients do not feel satisfied with their exercise regimen. 40% feel like others are critical of how much they exercise. 58% of patients do not feel proud of how their body looks. 43% say they are ashamed of their body. 51% of patients say exercise makes them feel worse. 66% of patients want to stop exercising due to excessive sweating. 82% of patients experience dizziness while exercising. 59% of patients experience nausea while exercising.
Conclusions:
Most patients have exercise as part of their POTS treatment plan and had a background in exercise prior to being diagnosed. Post-diagnosis, many patients have a negative self-identity, body image, and experience symptoms while exercising that create barriers for physical activity. Managing exercise barriers for POTS patients in care delivery can improve exercise outcomes.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.