Symptom Presentation and Access to Medical Care in Patients With Postural Orthostatic Tachycardia Syndrome: Role of Sex

Abstract

Background: Postural orthostatic tachycardia syndrome (POTS) is a chronic form of orthostatic intolerance that primarily impacts female patients of childbearing age. The role of sex differences in POTS is not well understood. We sought to identify sex differences in diagnosis, symptoms, comorbidities, and treatments in female and male patients diagnosed with POTS.

Methods: A comprehensive survey was designed in partnership by Dysautonomia International (East Moriches, NY) and Vanderbilt University Medical Center (Nashville, TN). Patients were recruited through Dysautonomia International's website and social media channels. The survey was delivered online through a secure research data capture database. Responses were analyzed according to biological sex. Continuous variables are presented as median (25th percentile-75th percentile), and categorical variables are presented as number and proportion of participants.

Results: A total of 8919 patients reported a physician diagnosis of POTS and were included in this analysis. The majority of respondents were female (93.7%). Female and male patients experienced misdiagnosis at similar rates (76.2% vs 74.9%, P = 0.5) and saw a similar number of doctors before diagnosis (5 [3-8] vs 5 [3-8], P = 0.9). Despite these similarities, diagnostic delay was longer for female, compared with male, patients (1.50 [0.25-5.25] years vs 0.92 [0.08-2.91] years, P < 0.001).

Conclusions: Despite the primarily female demographic of POTS patients, female patients experience more challenges with diagnosis than male patients. Increased awareness and recognition of POTS may help to reduce the diagnostic challenges in both female and male patients, and improve treatment and management for individuals living with this debilitating disorder.

Figure 1

(A) Median time from postural orthostatic tachycardia syndrome (POTS) symptom onset to first physician presentation for POTS (left), and time from first physician presentation for POTS to POTS diagnosis (right) in female vs male patients. Time from onset to presentation and from presentation to diagnosis were both significantly longer in female patients. The inset is a zoomed-in version of the main figure, to better illustrate the median and interquartile range. (B) Challenges with diagnosis in female and male patients. A similar proportion of female and male patients were misdiagnosed and were told their illness was psychological. More female than male patients were told their illness was “all in their head.”

Figure 2

(A) Emergency department (ED) utilization for postural orthostatic tachycardia syndrome (POTS) symptoms before and after diagnosis. (B) Median number of ED visits for POTS before (left) and after (right) diagnosis. The inset is a zoomed-in version of the main figure, to better illustrate the median and interquartile range. Extreme outlier values (375 visits in 1 female patient before diagnosis, and 600 visits in 1 female patient after diagnosis) were excluded from this box plot.