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. 2019 Oct;286(4):438-448.
doi: 10.1111/joim.12895. Epub 2019 Apr 16.

The face of postural tachycardia syndrome - insights from a large cross-sectional online community-based survey

B H Shaw  1 , L E Stiles  2   3 , K Bourne  1 , E A Green  4 , C A Shibao  4 , L E Okamoto  4 , E M Garland  4 , A Gamboa  4 , A Diedrich  4 , V Raj  1   5 , R S Sheldon  1 , I Biaggioni  4 , D Robertson  4 , S R Raj  1   4
Affiliations

The face of postural tachycardia syndrome - insights from a large cross-sectional online community-based survey

B H Shaw et al. J Intern Med. 2019 Oct.

Abstract

Background: Patients with postural tachycardia syndrome (POTS) experience chronic symptoms of orthostatic intolerance. There are minimal data detailing the demographics, clinical features and clinical course of this condition. This online, community-based survey highlights patients' experience with POTS. It consists of the largest sample of POTS patients reported to date.

Objectives: To describe the demographics, past medical history, medications, treatments and diagnostic journey for patients living with POTS.

Methods: Postural tachycardia syndrome patients completed an online, community-based, cross-sectional survey. Participants were excluded if they had not received a diagnosis of POTS from a physician. The questions focused on the patient experience and journey, rather than physiological responses.

Results: The final analysis included 4835 participants. POTS predominantly affects white (93%) females (94%) of childbearing age, with approximately half developing symptoms in adolescence (mode 14 years). POTS is a chronic multisystem disorder involving a broad array of symptoms, with many patients diagnosed with comorbidities in addition to POTS. POTS patients often experience lengthy delays [median (interquartile range) 24 (6-72) months] and misdiagnosis, but the diagnostic delay is improving. POTS patients can present with a myriad of symptoms most commonly including lightheadedness (99%), tachycardia (97%), presyncope (94%), headache (94%) and difficulty concentrating (94%).

Conclusions: These data provide important insights into the background, clinical features and diagnostic journey of patients suffering from POTS. These data should serve as an essential step for moving forward with future studies aimed at early and accurate diagnoses of these patients leading to appropriate treatments for their symptoms.

Keywords: autonomic nervous system; orthostatic intolerance.

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Conflict of interest statement

This work was supported in part by the National Heart, Lung, And Blood Institute of the National Institutes of Health under Award Number P01 HL056693, by the National Center for Advancing Translational Sciences Award UL1 TR000445. SRR receives research support from the Canadian Institutes of Health Research (CIHR; Ottawa, ON, Canada) grant MOP142426 and the Cardiac Arrhythmia Network of Canada (CANet; London, ON, Canada) grants SRG‐15‐P01‐001 and SRG‐17‐P27‐001.

Figures

Figure 1
Figure 1
Participant flow diagram. There were 4835 participants that met inclusion/exclusion criteria and were included in the final analysed sample.
Figure 2
Figure 2
Age of symptom onset. Distribution of reported symptom onset age amongst survey participants.
Figure 3
Figure 3
Delay in postural tachycardia syndrome (POTS) diagnosis. (a) Number of years of diagnostic delay prior to receiving final diagnosis of POTS and (b) Mean ± standard error of the mean diagnostic delay per decade since 1990. Diagnostic delay refers to the time between initial presentation to a physician and final diagnosis.
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