Objective:

To understand and characterize the most impactful symptoms associated with postural tachycardia syndrome (POTS) and their influence on activities of daily living (ADLs). 

Background:

POTS is a common and often debilitating form of dysautonomia associated with a variety of symptoms, including lightheadedness, multisystemic complaints, and chronic orthostatic intolerance. There is limited available data exploring how the most frequent and severe POTS-related symptoms impact ADLs. 

Design/Methods:

This is a multi-site, baseline cohort study of individuals who met consensus criteria for the diagnosis of POTS based on clinical or laboratory parameters. Participants completed online questionnaires evaluating the frequency and severity of 37 possible POTS-associated symptoms and their impact on ADLs. The most bothersome symptoms were identified based on "every day” frequency and “severe impact” on daily activities. The most severely affected ADLs were determined based on “severe difficulty” responses.

Results:

Ninety-one participants with clinical or laboratory diagnosis of POTS participated in this study. Mean time since symptom onset was 8.9 years and time since diagnosis was 3.2 years. The five most frequently reported daily symptoms included lightheadedness (57.1%), fatigue (56.0%), temperature dysregulation (53.8%), color/temperature changes in hands/feet (49.5%), and joint pain/instability (46.2%). The five most frequently reported symptoms that led to “severe impact” on daily activities were fatigue (23.3%), weakness (17.6%), worsening symptoms after exertion (17.1%), head/neck pain (17.0%), and fainting (16.0%). The ADLs that were most associated with “severe difficulty” due to POTS-related symptoms were exercise (16.5%), outside recreational activities (14.3%), shopping (13.2%), climbing stairs (12.1%), and travel for pleasure (11.0%).  

Conclusions:

POTS is associated with a significant daily symptom burden, leading to limitations in daily activities. Better understanding these symptoms and their impact will facilitate the development of validated instruments for POTS symptom burden.