Neuromuscular Disorders

Postural Orthostatic Tachycardia Syndrome (POTS)

Postural Orthostatic Tachycardia Syndrome Patients With Shared Medical Appointment: Change in COMPASS 31 Scores (N = 156)

2016 – 2020

Postural orthostatic tachycardia syndrome (POTS) is an under-recognized autonomic disorder. It is estimated that nearly half a million Americans suffer from POTS. Its common symptoms may include symptomatic changes in heart rate, blood pressure, and perspiration, gait instability, and difficulty in concentration, as well as changes in internal organ function. Recently, Cleveland Clinic has offered a shared medical appointment (SMA) for POTS patients. SMA is an innovative, interactive, and effective approach that brings patients with common needs together in lengthy discussion sessions. During SMA, patients relate to other people who are dealing with similar health issues, share stories and ideas, learn from each other, and create a bond. Although discussions are joined by healthcare professionals, patients can also be seen by healthcare professionals in a private room for individualized care, if needed.

COMPASS = Composite Autonomic Symptom Score

The Composite Autonomic Symptom Score (COMPASS 31) is a self-assessment of 6 domains of autonomic function: orthostatic intolerance, vasomotor, secretomotor, gastrointestinal, bladder, and pupillomotor.¹ The change in COMPASS 31 was analyzed at the last follow-up visit for POTS patients who attended at least 2 SMA visits between 2016 and 2020. During this period, 79.5% of patient scores were stable or improved, and approximately 20.5% worsened from their initial baseline, based on the COMPASS 31 score. Clinically meaningful change was defined as one-half a standard deviation,² or a total score change of 8. N = POTS patients with COMPASS 31 data available during at least 2 SMA visits between 2016 and 2020. Among different domains, secretomotor was the most likely to improve (34.5%) while bladder was the most likely to worsen (35.2%).

  1. Sletten DM, Suarez GA, Low PA, Mandrekar J, Singer W. COMPASS 31: a refined and abbreviated Composite Autonomic Symptom Score. Mayo Clin Proc. 2012 Dec;87(12):1196-1201.
  2. Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care. 2003 May;41(5):582-592.