Patients with Postural Orthostatic Tachycardia Syndrome have different experiences in Healthcare in Canada and USA

Postural orthostatic tachycardia syndrome (POTS) is an autonomic disorder characterized by excessive orthostatic tachycardia (≥30bpm) and orthostatic symptoms in the absence of significant hypotension (≥20/10mmHg)¹. While POTS significantly impacts the health of individuals worldwide, we hypothesize that the illness experience may vary between countries. The aim of this study was to compare POTS patients experience in the United States (US) and Canada.

Data were collected using the “Diagnosis and Impact of POTS” online survey: an IRB-approved, community-based, self-reported survey completed by physician-diagnosed POTS patients between July 2015-April 2021. Answers related to diagnostic process and illness experience were compared between patient populations in Canada and the US. Continuous results are reported as median [IQR], and categorical results are reported as percentage. Statistical analyses were conducted using Mann-Whitney U and Pearson Chi-square tests for continuous and categorical data, respectively.

Among the 5,733 participants who indicated their geographical location (Canada: n=221, US: n=5,512), the majority were female (94%) and over 18 years old (89%). Patients in Canada reported seeing more doctors for their POTS symptoms prior to receiving a diagnosis than US patients (6.0 [4.0–10.0] vs 5.0 [3.0–8.0]; p<0.001). Diagnostic delay was significantly longer for patients in Canada than for those in the US (2.2 [0.8–6.6] years vs 1.3 [0.3–5.3] years; p<0.001; Figure 1). Canadians were more likely to report suggesting POTS to their before their doctor suggested it (43% vs 34%, p=0.01). Even after diagnosis, a greater proportion of Canadian patients had a doctor tell them they had never heard of POTS (78.1% vs 67.3%, p<0.001). Canadians reported higher rates of symptoms like blurred vision (83% vs 75%, p=0.007), tremulousness (84.9% vs 76.3%, p=0.006), and tachycardia (99.5% vs 96.7%, p=0.035) than Americans.

Fig. 1.

Diagnositc delay, defined as the time between symptom onset and time of first diagnosis, in years, split by country (Canada versus USA). Data are plotted as a box and whiskers plot where the box represents the IQR (25^th to 75^th percentile) and the line in the box representss the median. The error bar length is 1.5x the IQR. The individual points plotted are outliers above the error cut-off.

It was more common for patients in Canada to have had a doctor suggest their symptoms were the result of a psychological illness, rather than a physical illness, prior to their POTS diagnosis, compared to US patients (86% vs 78%; p=0.005). Following POTS diagnosis, more patients in the US were being treated for a psychological condition that patients in Canada (38% vs. 29%, p=0.006)

While POTS patients experience barriers to care in both countries, POTS patients in Canada face greater diagnostic challenges than patients in the US. Increased diagnostic delays, the need to visit more physicians prior to diagnosis, and the lack of physician familiarity with POTS together suggest that Canada may benefit from additional POTS clinician education.