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

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 P...

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Vydané v:Journal of internal medicine Ročník 286; číslo 4; s. 438 - 448
Hlavní autori: 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.
Médium: Journal Article
Jazyk:English
Vydavateľské údaje: England Blackwell Publishing Ltd 01.10.2019
John Wiley and Sons Inc
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ISSN:0954-6820, 1365-2796, 1365-2796
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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.
AbstractList 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.
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. To describe the demographics, past medical history, medications, treatments and diagnostic journey for patients living with POTS. 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. 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%). 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.
BackgroundPatients 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.ObjectivesTo describe the demographics, past medical history, medications, treatments and diagnostic journey for patients living with POTS.MethodsPostural 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.ResultsThe 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%).ConclusionsThese 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.
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.BACKGROUNDPatients 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.To describe the demographics, past medical history, medications, treatments and diagnostic journey for patients living with POTS.OBJECTIVESTo describe the demographics, past medical history, medications, treatments and diagnostic journey for patients living with POTS.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.METHODSPostural 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.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%).RESULTSThe 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%).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.CONCLUSIONSThese 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.
Author Shaw, B. H.
Okamoto, L. E.
Diedrich, A.
Shibao, C. A.
Gamboa, A.
Raj, V.
Green, E. A.
Robertson, D.
Biaggioni, I.
Raj, S. R.
Stiles, L. E.
Bourne, K.
Sheldon, R. S.
Garland, E. M.
AuthorAffiliation 2 Department of Neurology Stony Brook University School of Medicine Stony Brook NY USA
3 Dysautonomia International East Moriches NY USA
5 Department of Psychiatry University of Calgary Calgary AB Canada
1 Department of Cardiac Sciences Libin Cardiovascular Institute of Alberta University of Calgary Calgary AB Canada
4 Autonomic Dysfunction Center Division of Clinical Pharmacology Vanderbilt University Medical Center Nashville TN USA
AuthorAffiliation_xml – name: 1 Department of Cardiac Sciences Libin Cardiovascular Institute of Alberta University of Calgary Calgary AB Canada
– name: 4 Autonomic Dysfunction Center Division of Clinical Pharmacology Vanderbilt University Medical Center Nashville TN USA
– name: 3 Dysautonomia International East Moriches NY USA
– name: 5 Department of Psychiatry University of Calgary Calgary AB Canada
– name: 2 Department of Neurology Stony Brook University School of Medicine Stony Brook NY USA
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  orcidid: 0000-0003-2733-8274
  surname: Shaw
  fullname: Shaw, B. H.
  organization: University of Calgary
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  givenname: L. E.
  surname: Stiles
  fullname: Stiles, L. E.
  organization: Dysautonomia International
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  surname: Bourne
  fullname: Bourne, K.
  organization: University of Calgary
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  surname: Green
  fullname: Green, E. A.
  organization: Vanderbilt University Medical Center
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  surname: Shibao
  fullname: Shibao, C. A.
  organization: Vanderbilt University Medical Center
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  surname: Okamoto
  fullname: Okamoto, L. E.
  organization: Vanderbilt University Medical Center
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  surname: Garland
  fullname: Garland, E. M.
  organization: Vanderbilt University Medical Center
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  fullname: Gamboa, A.
  organization: Vanderbilt University Medical Center
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  fullname: Diedrich, A.
  organization: Vanderbilt University Medical Center
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  surname: Raj
  fullname: Raj, V.
  organization: University of Calgary
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  givenname: R. S.
  surname: Sheldon
  fullname: Sheldon, R. S.
  organization: University of Calgary
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  organization: Vanderbilt University Medical Center
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  organization: Vanderbilt University Medical Center
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  surname: Raj
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  email: satish.raj@ucalgary.ca
  organization: Vanderbilt University Medical Center
BackLink https://www.ncbi.nlm.nih.gov/pubmed/30861229$$D View this record in MEDLINE/PubMed
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Issue 4
Keywords orthostatic intolerance
autonomic nervous system
Language English
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2019 The Authors. Journal of Internal Medicine published by John Wiley & Sons Ltd on behalf of Association for Publication of The Journal of Internal Medicine.
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– reference: 30968485 - J Intern Med. 2019 Oct;286(4):481-483
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Snippet Background Patients with postural tachycardia syndrome (POTS) experience chronic symptoms of orthostatic intolerance. There are minimal data detailing the...
Patients with postural tachycardia syndrome (POTS) experience chronic symptoms of orthostatic intolerance. There are minimal data detailing the demographics,...
BackgroundPatients with postural tachycardia syndrome (POTS) experience chronic symptoms of orthostatic intolerance. There are minimal data detailing the...
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StartPage 438
SubjectTerms Adolescents
Adult
Aged
autonomic nervous system
Cardiac arrhythmia
Communities
Cross-Sectional Studies
Demographics
Demography
Diagnostic systems
Female
Females
Headache
Humans
Internet
Intolerance
Male
Middle Aged
Original
orthostatic intolerance
Orthostatic tolerance
Patients
Physiological responses
Polls & surveys
Postural Orthostatic Tachycardia Syndrome - diagnosis
Postural Orthostatic Tachycardia Syndrome - physiopathology
Postural Orthostatic Tachycardia Syndrome - psychology
Postural Orthostatic Tachycardia Syndrome - therapy
Posture
Surveys and Questionnaires
Tachycardia
Title The face of postural tachycardia syndrome – insights from a large cross‐sectional online community‐based survey
URI https://onlinelibrary.wiley.com/doi/abs/10.1111%2Fjoim.12895
https://www.ncbi.nlm.nih.gov/pubmed/30861229
https://www.proquest.com/docview/2297061708
https://www.proquest.com/docview/2191006029
https://pubmed.ncbi.nlm.nih.gov/PMC6790699
Volume 286
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