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Cited by 326Cardiovascular Syncope and Autonomic DisordersPsychosomatic Disorders and Their TreatmentsHeart Rate Variability and Autonomic Control

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

Open access
Shaw, B. H., Stiles, L. E., Bourne, K., Green, E. A., Shibao, C. A., Okamoto, L. E., Garland, E. M., Gamboa, A. +6 more·2019·Journal of Internal Medicine
DOI 10.1111/joim.12895PMC PMC6790699
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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.

AI snapshot

Written from the paper’s full text.

TL;DR

This large online community-based survey of 4,835 patients with physician-diagnosed POTS describes a predominantly white, female, childbearing-age population with chronic multisystem symptoms and a frequently delayed, often misdiagnosed diagnostic journey. It reports that POTS symptoms commonly begin in adolescence or adulthood and that diagnostic delay, while improving, remains substantial.

Key findings

  • Among 4,835 participants, POTS predominantly affected females (94%) and white patients (93%); mean age at symptom onset was 20.7 (12.0) years, median 17 (IQR 13–28), with a modal onset age of 14 years.
  • Diagnostic delay was long: median 24 (IQR 6–72) months, mean 4.9 ± 7.1 years; 75% reported prior misdiagnosis, 34% first suggested the POTS diagnosis themselves, and patients saw a mean of 7 ± 11 physicians before diagnosis.
  • Common symptoms included lightheadedness (99%), tachycardia (97%), presyncope (94%), headache (94%), and difficulty concentrating (94%); the triad of lightheadedness, tachycardia, and presyncope was present in 91%.
  • Comorbidities were common: 83% reported at least one additional physician-diagnosed condition, including migraine headaches (40%), irritable bowel syndrome (30%), Ehlers–Danlos syndrome (25%), chronic fatigue syndrome (21%), asthma (20%), and fibromyalgia (20%).

Methods

  • Online, community-based, cross-sectional survey conducted with Dysautonomia International; participants were excluded if they had not received a POTS diagnosis from a physician. Of 6,475 consenting participants, 4,835 were included in the final analysis.
  • Data were collected from July 2015 to July 2017 using self-report questions on demographics, past medical history, comorbidities, medications, treatments, diagnostic journey, and social/economic impacts; responses were stored in REDCap and analyzed in SPSS Version 22.
  • Analyses used means ± SD, medians with IQR, counts/percentages, Student’s t-test or Mann–Whitney U-test for continuous variables, and chi-square tests for categorical variables, with P < 0.05; a subgroup seen at Autonomic Disorders Consortium sites (n = 430; 9%) was compared with those seen elsewhere.

Limitations

  • The paper states that most patients were born in the USA, with respondents from over 15 countries making up less than 20% of the sample, which may limit generalizability.
  • The paper states likely selection bias toward English-speaking patients, those with Internet access, and those already connected to Dysautonomia International; cross-sectional self-report may under-report comorbidities; anonymous self-report was not independently verified and could allow repeated or fraudulent completion, though the authors consider this unlikely.
  • Evident from the text: POTS diagnoses and comorbid diagnoses were not formally verified by the research team, and patients were not formally assessed for the study.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.1111/joim.12895

Cites

41 of 41 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 28 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    The mean age at symptom onset was 20.7 (SD 12.0) years.

    “Age at symptom onset | 20.7 (12.0) years”
    • Also stated in: § POTS symptom triggers · plain
      “The mean age of POTS symptom onset in the participants was 21 ± 12 years”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.
  • Findingown data

    The survey sample was predominantly female (94%).

    “POTS predominantly affects white (93%) females (94%) of childbearing age”
    • Also stated in: § Patient characteristics · plain
      “Female | 4539 (94%)”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.
  • Findingown data

    9% of patients had been seen at an Autonomic Disorders Consortium site.

    “Only a minority of patients (n = 430; 9%) had been seen at an Autonomic Disorders Consortium site.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.
  • Findingown data

    On average, patients saw 7 ± 11 physicians prior to diagnosis (median 5, IQR 3-8).

    “On average, patients saw 7 ± 11 [median 5 (IQR 3–8)] physicians prior to a diagnosis of POTS.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.
  • Findingown data

    Only 7% of participants reported having all three of the most common comorbidities (migraine headaches, irritable bowel syndrome, and Ehlers-Danlos syndrome).

    “Only 290 (7%) of participants reported having all three of the most common comorbidities (migraine headaches, irritable bowel syndrome and Ehlers–Danlos syndrome).”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.
  • May combine two claims. 19
  • Classified as probably not a substantial claim. 19

  • May combine two claims.

    Findingown data

    For migraine headaches, mast cell activation disorder, inappropriate sinus tachycardia, and vasovagal syncope, the differences in prevalence between Consortium and non-Consortium respondents were statistically significant.

    “For comorbidities such as migraine headaches (P = 0.017), mast cell activation disorder (P < 0.001), inappropriate sinus tachycardia (P = 0.021) and vasovagal syncope (P < 0.001), these differences were statistically significant.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.

  • May combine two claims.

    Findingown data

    Among those with a specific trigger, the most common triggers were infection (41%), surgery (12%), and pregnancy (9%).

    “Of these, the most common triggers were an infection (n = 788; 41%), surgery (n = 237; 12%) or pregnancy (n = 163; 9%).”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.

  • May combine two claims.

    Findingnone given

    Approximately half of POTS patients develop symptoms in adolescence and half develop symptoms in adulthood.

    “with approximately half developing symptoms in adolescence and half developing symptoms in adulthood”
    Quote in the paperSubstantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • May combine two claims.

    Findingown data

    In our study, cardiologists most commonly made the POTS diagnosis, followed by neurologists, cardiac electrophysiologists and family physicians.

    “In our study, cardiologists most commonly made this diagnosis, followed by neurologists, cardiac electrophysiologists and family physicians.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • May combine two claims.

    Findingown data

    POTS was most commonly diagnosed by a general cardiologist (41%), neurologist (19%), cardiac electrophysiologist (15%), and family physician (8%).

    “Postural tachycardia syndrome was most commonly diagnosed by a general cardiologist (n = 1973; 41%), neurologist (n = 889; 19%), cardiac electrophysiologist (n = 696; 15%) and family physician (n = 392; 8%).”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.

  • May combine two claims.

    Findingown data

    Despite improvement, the average diagnostic delay since 2009 is still over 4.7 ± 6.9 years (median 23 months, IQR 6-69).

    “Despite this improvement, the average diagnostic delay since 2009 is still over 4.7 ± 6.9 years [median 23 (IQR 6–69) months].”
    Quote in the paperSubstantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The survey responses accurately reflect patients' experiences and clinical features.

  • May combine two claims.

    Findingcitation

    Fewer patients in our survey reported CFS (21%) or vasovagal syncope (13%) compared with the POTS UK study (CFS: 29%; vasovagal syncope: ~30%).

    “Fewer patients in our survey reported having a diagnosis of chronic fatigue syndrome (CFS) (21%) or vasovagal syncope (13%) in comparison with the POTS UK study (reported as CFS: 29%; vasovagal syncope: ~30%) 18.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [18] Kavi L, Nuttall M, Low DA et al A profile of patients with postural tachycardia syndrome and their experience of healthcare in the UK. Br J Cardiol 2016; 23: 1– 6.

      Not checked in the free run.

    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Findingnone given

    The diagnostic delay for POTS is improving.

    “although the diagnostic delay for POTS is improving”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • May combine two claims.

    Findingcitation

    A history of syncope was reported in only 36% of survey participants, which is much lower than that reported in the smaller POTS UK study (58%).

    “A history of syncope was reported in only 36% of survey participants, which is much lower than that reported in the smaller POTS UK study (58%) 18.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [18] Kavi L, Nuttall M, Low DA et al A profile of patients with postural tachycardia syndrome and their experience of healthcare in the UK. Br J Cardiol 2016; 23: 1– 6.

      Not checked in the free run.

    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    Non-responses to numerical survey questions were recoded to 'missing at random' for data analyses.

    “these non‐responses were recoded to ‘missing at random’ for data analyses”
    Quote in the paperNot a substantial claim
    • The authors state this as an assumption: Non-responses to numerical survey questions were missing at random.

  • May combine two claims.

    Interpretationreasoning

    The majority of POTS patients are either managed in the community by general practitioners or specialists, or they are not actively followed.

    “This may suggest that the majority of POTS patients are either managed in the community by either general practitioners or specialists, or they are not actively followed.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • May combine two claims.

    Interpretationcitation

    POTS is a multisystem disorder that can be associated with a variety of comorbidities.

    “POTS is clearly a multisystem disorder that can be associated with a variety of comorbidities 5, 22.”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [5] Fedorowski A. Postural Orthostatic Tachycardia Syndrome: clinical presentation, aetiology, and management. J Intern Med 2019; 285: 352– 66. 30372565 source

      Not checked in the free run.

    • cites [22] Boris JR. Postural orthostatic tachycardia syndrome in children and adolescents. Auton Neurosci 2018; 215: 97– 101. 29778304 source

      Not checked in the free run.

    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • May combine two claims.

    Interpretationown data

    POTS is a chronic multisystem disorder involving a broad array of symptoms.

    “POTS is a chronic multisystem disorder involving a broad array of symptoms”
    Quote in the paperSubstantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.
    • Rests on an assumption: The online community-based sample is representative of the broader POTS patient population.

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    The recent improvement in overall diagnostic delay might suggest improved medical awareness of POTS as a clinical condition.

    “The recent improvement in overall diagnostic delay might suggest improved medical awareness of POTS as a clinical condition.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • Probably not a substantial claim: may not pass S1 (asserted).

    Study design and conductown data

    The comorbidities reported by a subgroup of patients seen at Consortium sites were compared to those not seen at Consortium sites to determine if the broader patient community reported a higher or lower rate of comorbidities than those identified by physicians with significant POTS expertise.

    “We compared the comorbidities reported by a subgroup of patients that had been seen at an Autonomic Disorders Consortium (‘Consortium’) site to those not seen at the Consortium sites to determine if the broader patient community reported a higher or lower rate of comorbidities than those identified by physicians with significant POTS expertise.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductown data

    Clear outlier and implausible data were removed.

    “Clear outlier and implausible data (e.g. age at symptom onset of 120 years) were removed.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

    Interpretationnone given

    The differences in the two surveys may reflect regional differences in physician diagnostic practices and expertise.

    “The differences in the two surveys may reflect regional differences in physician diagnostic practices and expertise.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    All participants 18 years or older provided informed consent.

    “All participants 18 years or older provided informed consent.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based). May combine two claims.

    Interpretationreasoning

    Many individuals suffering from POTS may not receive a diagnosis at all because many people cannot afford to see multiple doctors, and some healthcare systems or insurance providers do not allow multiple 'second opinions'.

    “This raises concerns that many individuals suffering from POTS may not receive a diagnosis at all, since many people cannot afford to see multiple doctors, and some healthcare systems or insurance providers do not allow multiple ‘second opinions’.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • Classified as probably not a substantial claim.

    Study design and conductnone given

    Individual patients were not formally assessed by the research team for this study.

    “Individual patients were not formally assessed by the research team for this study.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Study design and conductnone given

    Participants were excluded if they did not consent or had not received a diagnosis of POTS from a physician.

    “Participants were excluded if they did not consent or had not received a diagnosis of POTS from a physician.”
    Quote in the paperSubstantial claim
    • Rests on an assumption: Participants' self-reported physician diagnosis of POTS is accurate.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    The survey was iteratively developed with beta testing performed by members of the Dysautonomia International Patient Advisory Board.

    “The survey was iteratively developed with beta testing performed by members of the Dysautonomia International Patient Advisory Board.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Other studies have suggested that patients with POTS may have increased prevalence of depression and anxiety.

    “However, other studies have also suggested that patients with POTS may have increased prevalence of depression and anxiety 30.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [30] Anderson JW, Lambert EA, Sari CI et al Cognitive function, health‐related quality of life, and symptoms of depression and anxiety sensitivity are impaired in patients with the postural orthostatic tachycardia syndrome (POTS). Front Physiol 2014; 5: 230. 25009504 PMC4070177 source

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Study design and conductnone given

    Data collection was done in a self-reported manner.

    “Data collection was done in a self‐reported manner.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductnone given

    The study was approved by the Vanderbilt University Institutional Review Board and the Calgary Conjoint Health Research Ethics Board.

    “The ‘Diagnosis and Impact of POTS’ study was approved by the Vanderbilt University Institutional Review Board and the Calgary Conjoint Health Research Ethics Board.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationown data

    These findings confirm prior findings, but now establish them in a cohort many times larger than prior studies.

    “These confirm prior findings, but now establish them in a cohort that is many times larger than prior studies that have detailed the clinical characteristics of POTS patients 17, 18, 22, 36.”
    Quote in the paperSubstantial claim0 of 3 sources checked
    • cites [17] Thieben MJ, Sandroni P, Sletten DM et al Postural orthostatic tachycardia syndrome: the Mayo clinic experience. Mayo Clin Proc 2007; 82: 308– 13. 17352367 source

      Not checked in the free run.

    • cites [18] Kavi L, Nuttall M, Low DA et al A profile of patients with postural tachycardia syndrome and their experience of healthcare in the UK. Br J Cardiol 2016; 23: 1– 6.

      Not checked in the free run.

    • cites [22] Boris JR. Postural orthostatic tachycardia syndrome in children and adolescents. Auton Neurosci 2018; 215: 97– 101. 29778304 source

      Not checked in the free run.

    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

    Interpretationreasoning

    Improving the recognition of POTS symptoms may be helpful in avoiding misdiagnosis and reducing diagnostic delays, which could potentially improve mental health outcomes.

    “Improving the recognition of POTS symptoms may be helpful in avoiding misdiagnosis and reducing diagnostic delays, which could potentially improve mental health outcomes.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: The diagnoses of POTS in the survey respondents are correct.
    • Rests on an assumption: The self-reported survey data are accurate enough to support the study's findings.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Other studies have reported similar findings.

    “Other studies have reported similar findings 17, 18.”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [17] Thieben MJ, Sandroni P, Sletten DM et al Postural orthostatic tachycardia syndrome: the Mayo clinic experience. Mayo Clin Proc 2007; 82: 308– 13. 17352367 source

      Not checked in the free run.

    • cites [18] Kavi L, Nuttall M, Low DA et al A profile of patients with postural tachycardia syndrome and their experience of healthcare in the UK. Br J Cardiol 2016; 23: 1– 6.

      Not checked in the free run.

  • May combine two claims.

    Study design and conductreasoning

    The anonymous nature of the survey meant it relied on honest self-reporting, which carries limitations and potential for bias.

    “given the anonymous nature of this survey, it relied on honest self‐reporting, which carries with it both some limitations and the potential for introducing bias.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

    Premisecitation

    These are known issues with survey-based data.

    “These are known issues with survey‐based data 37.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [37] Safdar N, Abbo LM, Knobloch MJ, Seo SK. Research methods in healthcare epidemiology: survey and qualitative research. Infect Control Hosp Epidemiol 2016; 37: 1272– 7. 27514583 PMC5325124

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductreasoning

    There were no barriers for a participant to complete the survey multiple times or to fraudulently complete the survey.

    “There were no barriers for a participant to complete the survey multiple times or to fraudulently complete the survey.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing). May combine two claims.

    Interpretationreasoning

    The authors feel it is unlikely that participants completed the survey multiple times or fraudulently, given the time required to fill out the lengthy survey.

    “We feel this is unlikely, however, given the time required to fill out this lengthy survey.”
    Quote in the paperNot a substantial claim
32 of 32

  • The paper relies on this without support.

    There are few published data detailing the demographics, features and clinical course of POTS.

    “Despite this, there are few published data detailing the demographics, features and clinical course of this condition.”

  • The paper relies on this without support.

    Most studies of POTS are limited by small sample sizes, referral bias, and comprise populations from single, highly specialized tertiary care centres.

    “Most studies are limited by small sample sizes, referral bias and comprise populations from single, highly specialized tertiary care centres.”

  • The paper relies on this without support.

    Participants' self-reported physician diagnosis of POTS is accurate.

    “Participants were excluded if they did not consent or had not received a diagnosis of POTS from a physician.”

  • The paper relies on this without support.

    The online community-based sample is representative of the broader POTS patient population.

    “This online, community‐based survey highlights patients’ experience with POTS.”

  • The authors state this as an assumption.

    Non-responses to numerical survey questions were missing at random.

    “these non‐responses were recoded to ‘missing at random’ for data analyses”

  • The paper relies on this without support.

    The survey responses accurately reflect patients' experiences and clinical features.

    “Data collection was done in a self‐reported manner.”

  • The paper relies on this without support.

    This online, community-based survey consists of the largest sample of POTS patients reported to date.

    “It consists of the largest sample of POTS patients reported to date.”

  • The paper relies on this without support.

    The diagnoses of POTS in the survey respondents are correct.

    “This means that we cannot verify that the diagnoses of POTS are correct in each case.”

  • The paper relies on this without support.

    The self-reported survey data are accurate enough to support the study's findings.

    “since the survey was based on cross‐sectional patient self‐reports, it is likely that some co‐morbid diagnoses were under‐reported if the patient had not been diagnosed with a comorbidity that was present, or if they had been diagnosed with the comorbidity, but were unaware of the details of their medical records.”

  • The paper relies on this without support.

    The online survey sample is representative of the broader POTS population.

    “our survey may have a selection bias for certain patients, particularly English‐speaking patients, those with Internet access and those already connected to Dysautonomia International, a patient advocacy group that played an important role in patient recruitment.”
10 of 10

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • On initial presentation, patients with POTS are frequently misdiagnosed as having an anxiety disorder.

    “On initial presentation, patients with POTS are frequently misdiagnosed as having an anxiety disorder.”

    From Diagnosis and management of postural orthostatic tachycardia syndrome (2022) · cites this paper as [4]

    The Results section, “Misdiagnosis in POTS” (page unavailable), reports that 77% of respondents encountered a physician who suggested a psychiatric or psychological explanation before their POTS diagnosis. It does not establish that the suggested condition was specifically an anxiety disorder or that this happened at the initial presentation. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • Common comorbid conditions seen with POTS include hypermobile Ehlers-Danlos syndrome, mast cell activation syndrome, migraine and ME/CFS.

    “Common comorbid conditions seen with POTS4,21 include hypermobile Ehlers–Danlos syndrome, mast cell activation syndrome,22 migraine and ME/CFS (Table 1).18”

    From Diagnosis and management of postural orthostatic tachycardia syndrome (2022) · cites this paper as [4]

  • POTS is more common in girls and young women, beginning in puberty and through early adulthood.

    “The syndrome is more common in girls and young women and has been associated with other disorders, like migraine and Ehlers–Danlos syndrome.4”

    From Diagnosis and management of postural orthostatic tachycardia syndrome (2022) · cites this paper as [4]

  • POTS usually affects adolescent girls and young adult women, so prevalence is higher in this population and lower in men and older people.

    “It usually affects adolescent girls and young adult women,4 and so the prevalence is higher in this population and lower in men and older people.”

    From Diagnosis and management of postural orthostatic tachycardia syndrome (2022) · cites this paper as [4]

  • POTS is associated with other disorders, such as migraine and Ehlers-Danlos syndrome.

    “The syndrome is more common in girls and young women and has been associated with other disorders, like migraine and Ehlers–Danlos syndrome.4”

    From Diagnosis and management of postural orthostatic tachycardia syndrome (2022) · cites this paper as [4]

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

  • Comparison of symptom improvement rates is reversed

    Major

    The reported 1974 improvements among 3476 patients seen elsewhere equal 56.8%, not 43%. That is higher, not lower, than the reported 54% among patients seen at Consortium sites.

    Reported 43 · recomputed 56.789413

  • Palpitations percentage does not match its count

    Minor

    The table reports palpitations in 3033 of 4031 respondents, which is 75.2%, not 87%.

    Reported 87 · recomputed 75.241875

2 of 2

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Authors
Shaw, B. H., Stiles, L. E., Bourne, K., Green, E. A., Shibao, C. A., Okamoto, L. E., Garland, E. M., Gamboa, A., Diedrich, A., Raj, V., Sheldon, R. S., Biaggioni, I., Robertson, D., & Raj, S. R.
Affiliations
  • University of Calgary (CA)
  • Stony Brook University (US)
  • Vanderbilt University Medical Center (US)
Corresponding author
Raj, S. R.
ORCID
Venue
Journal of Internal Medicine
Publisher
Wiley
Published
2019-04-16
Volume
286
Issue
4
Pages
438-448
ISSN
  • 0954-6820 (ISSN-L)
  • 1365-2796
DOI
10.1111/joim.12895
PMC
PMC6790699
OpenAlex
W2921392213
Semantic Scholar
18fb58a2ce0aa7e37cf4acb91197c260593d77ab
Cited by
326
References
41
Citations by year
2026: 53 · 2025: 56 · 2024: 44 · 2023: 40 · 2022: 51 · 2021: 52 · 2020: 26 · 2019: 4
FWCI
31.73
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Internal Medicine (publishedVersion, cc-by-nc-nd)
  • PubMed Central (publishedVersion, cc-by-nc-nd)
  • PubMed (publishedVersion)
Funders
  • National Heart, Lung, and Blood Institute (P01 HL056693)
  • Canadian Institutes of Health Research (MOP142426)
Topics
  • Health Sciences › Medicine › Surgery › Cardiovascular Syncope and Autonomic Disorders
  • Health Sciences › Medicine › Psychiatry and Mental health › Psychosomatic Disorders and Their Treatments
  • Health Sciences › Medicine › Cardiology and Cardiovascular Medicine › Heart Rate Variability and Autonomic Control
Keywords
postural orthostatic tachycardia syndrome, orthostatic intolerance, patient demographics, delayed diagnosis, misdiagnosis, comorbidities, symptom burden, lightheadedness, presyncope, headache, patient experience, adolescent onset
MeSH terms
Adult, Aged, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, Postural Orthostatic Tachycardia Syndrome

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-06.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-06.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

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