A Survey-Based Study Examining Exercise in Postural Orthostatic Tachycardia Syndrome (POTS) Patients

TL;DR

This study explores why some POTS patients exercise regularly and the barriers others face, revealing that many struggle with negative self-image and exercise-related symptoms.

Contribution

The study provides insights into exercise behaviors and barriers specific to POTS patients through a survey-based approach.

Findings

Most POTS patients include exercise in their treatment plan but face barriers like negative self-identity and physical symptoms.

Over half of patients reported that exercise makes them feel worse or causes dizziness and nausea.

Many patients experience shame and dissatisfaction with their bodies, impacting their exercise motivation.

Abstract

Objective: To better understand why some postural orthostatic tachycardia syndrome (POTS) patients incorporate exercise regularly into their treatment and what barriers challenge others.

Background: 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 to optimizing exercise.

Design/methods: We sent an institutional review board-approved survey via the patient e-messenger (MyChart, Epic Systems, Verona, WI) to 421 patients who participated in a shared medical appointment (SMA) by Zoom (Zoom Video Communications, San Jose, CA) within our tertiary care center between March 2022 and October 2022. The survey gathered data for the following variables: demographics, gender, body identity, symptoms that interfere with exercise, exercise tolerance, exercise prescription, attitude toward exercise, and exercise resource accessibility.

Results: Of the 421 patients messaged through MyChart, 260-286 (61.75%-67.93%) responses were formally submitted per question. A total of 221/283 (78.09%) patients have had exercise recommended as a lifestyle modification; 220/286 (76.92%) patients exercised regularly before experiencing POTS symptoms; 167/271 (61.62%) patients were unsatisfied with their exercise regimen; 111/271 (40.95%) felt like others are critical of how much they exercise; 157/267 (58.80%) patients did not feel proud of how their body looks; 116/265 (43.77%) said they are ashamed of their body; 137/265 (51.69%) patients said exercise makes them feel worse; 176/266 (66.16%) patients wanted to stop exercising due to excessive sweating; 220/267 (82.39%) patients experienced dizziness while exercising; 159/266 (59.77%) patients experienced nausea while exercising.

Conclusion: Most patients include exercise in their POTS treatment plan, and have a background in exercise before being diagnosed. However, many patients have negative self-identity and body image post diagnosis and experience symptoms while exercising that create barriers to physical activity. Managing exercise barriers for POTS patients in care delivery could improve exercise outcomes.

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