Long-term outcomes in patients with postural orthostatic tachycardia syndrome with an average follow-up of over 20 years, 2026, Kate M. Bourne et al

[Mij]

Abstract

Background
Postural orthostatic tachycardia syndrome (POTS) is a chronic form of orthostatic intolerance that primarily affects female patients. There are scarce data evaluating the long-term outcomes in POTS.

Objectives
This study sought to evaluate the long-term impacts of POTS over multiple decades in adult patients.

Methods
Past research participants at the VUMC Autonomic Dysfunction Center Research Unit (symptomatic ≥10 years) were recruited to participate in the study. A custom survey was administered at one time point. Participants were grouped as IMPROVED or NOT IMPROVED based on symptom course over time. Continuous data are reported as median (25th, 75th).

Results
Patients with POTS (n = 44; 98% female) were included in the analysis (62% response rate). Patient age at the time of survey was 48 (38, 54) years, with 23 (15, 27) years from POTS symptom onset, and 17 (12, 24) years from POTS diagnosis. Since diagnosis, symptoms completely resolved in 2%, improved in 46%, worsened in 25%, were unchanged in 11%, and demonstrated a variable symptom course in 16%. Patients who were NOT IMPROVED were more likely than those IMPROVED to have neuropathy, gastroparesis, and overactive bladder symptoms.

Conclusions
In a cohort of adult patients with POTS who received care at a national referral center for autonomic disorders, almost half reported their POTS symptoms as improved 10 or more years after symptom onset. Most patients with POTS experienced ongoing symptoms for many years after diagnosis.
Study

 

[Mij]

Comorbidities

Most participants reported one or more of the common POTS comorbidities. More patients had irritable bowel syndrome, autoimmune disease, myalgic encephalomyelitis/chronic fatigue syndrome, and neuropathy than other findings [18, 21]. The proportion of patients with gastroparesis and mast cell activation syndrome (MCAS) were similar to a large survey [18]. The proportion of patients with hypermobile Ehlers–Danlos syndrome (EDS) was lower than other findings ranging from 25% to 30% [18, 22, 23]. It is possible that EDS is more commonly found in patients with a younger age of POTS onset and is therefore less prevalent in this group of patients with POTS onset at an older age [24].

Comorbidities are likely a strong factor in determining outcomes in POTS. All but one participant in NOT IMPROVED had one or more of neuropathy, gastroparesis and overactive bladder symptoms, compared to only 20% of IMPROVED. An association between neuropathy and gastrointestinal and bladder symptoms bas been recognized in patients with POTS [25]. Overactive bladder symptoms are common in patients with POTS [26], and bladder dysfunction can result from peripheral neuropathy [27]. Gastroparesis is also associated with neuropathy [28]. These findings may point toward an underlying neuropathy that leads to worsening POTS symptoms over time in this subgroup. Further research is needed to explore this association.

The reductions (improvement) in total COMPASS-31 score, as well as the OI domain at the time of the survey, were comparable to other shorter term follow-up studies of POTS patients [8, 12, 29]. In contrast, the pupillomotor scores increased over time. The gastrointestinal and bladder scores also increased, but these were not significantly different after Bonferroni correction. This may indicate that current POTS treatments are helpful in targeting OI symptoms but are less effective at treating GI symptoms. This may also reflect the challenges with diagnosing and treating conditions related to POTS including MCAS. Symptoms at the time of initial evaluation did not appear to predict long-term outcomes. There were no significant differences in COMPASS-31 at the time of evaluation, as recalled by participants. NOT IMPROVED participants reported their overall health (on a 0–100 scale) as better at the time of first VUMC visit compared to IMPROVED. In a study of POTS patients with and without neuropathy, patients with neuropathy rated their health-related quality of life as better than those with no neuropathy [25]. It is possible that patients with neuropathy have a slower deterioration of symptoms over time, whereas POTS patients without neuropathy are initially worse, and have poorer quality of life, but improve over time. More patients in the NOT IMPROVED group reported neuropathy at the time of the survey and this could explain their higher initial scores. Thus, we were not able to identify predictors of worse outcomes at the time of initial diagnosis, highlighting the importance of clinical follow-up in these patients.

 

[duncan]

Postural orthostatic tachycardia syndrome (POTS) is a chronic form of orthostatic intolerance that primarily affects female patients

Patients with POTS (n = 44; 98% female) w

I wonder if this claim that POTS is apparently overwhelmingly a female disorder is accurate.

I'm male and I have POTS.

 

[Mij]

Female participants

Most participants were female (98%, n = 43). Over half of participants were premenopausal (60%, n = 25), and 41% (n = 17) reported they were postmenopausal at the time of the survey. More information about female participants can be found in Table S1.

 

[Yann04]

Overactive bladder symptoms are common in patients with POTS [26], and bladder dysfunction can result from peripheral neuropathy [27].

How is overactive bladder measured?
Could it simply be a consequence of common POT”S” advice to drink lots of water, or my anecdotal experience that polydipsia is something I’ve heard many people with ME/CFS POT and Post-COVID POT mention.

 

[InitialConditions]

I wonder if this claim that POTS is apparently overwhelmingly a female disorder is accurate.

I'm also a male with PoTS but it's just a well known fact that this is a highly female predominant condition. The figures cited are usually somewhere in the region of 75–85% female predominance, although some studies are higher than that (like this one).

 

[Felis Catus]

We tried to contact 120 individuals who had initially attended the Autonomic Dysfunction Center Research Unit at VUMC between 1987 and 2014. In total, 74 participants responded to contact, and 46 participants completed the survey (62% response rate) between March and September 2021. Not all participants were still being regularly followed at VUMC. One participant reported POTS symptom onset <10 years prior to the survey date, and one person did not answer the questions regarding POTS symptom changes. They were both excluded from further analysis. Therefore, a total of 44 participants with POTS were included in the analysis (Fig. 1).

Just to add that maybe there were more males among those 120 but they couldn't be reached or didn't respond, so they ended up with only 1 male included in the analysis.

 

[Mij]

Years ago there was a study where pwME/CFS state resembled a central type of diabetes insipidus.

Low Vasopressin in ME/CFS

Could it simply be a consequence of common POT”S” advice to drink lots of water, or my anecdotal experience that polydipsia is something I’ve heard many people with ME/CFS POT and Post-COVID POT mention.

 

[Evergreen]

How is overactive bladder measured?
Could it simply be a consequence of common POT”S” advice to drink lots of water, or my anecdotal experience that polydipsia is something I’ve heard many people with ME/CFS POT and Post-COVID POT mention.

I have overactive bladder. It feels like a UTI, all the time - mercifully less so, once on medication and other measures. Very sore, as well as the frequency and urgency. Diagnosed from history, no infection and ideally, a clear cystoscopy.

So it's quite different from what happens when you just drink a lot.