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: | , , , , , , , , , , , , , |
| Médium: | Journal Article |
| Jazyk: | English |
| Vydavateľské údaje: |
England
Blackwell Publishing Ltd
01.10.2019
John Wiley and Sons Inc |
| Predmet: | |
| ISSN: | 0954-6820, 1365-2796, 1365-2796 |
| On-line prístup: | Získať plný text |
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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. |
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| 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 |
| Author_xml | – sequence: 1 givenname: B. H. orcidid: 0000-0003-2733-8274 surname: Shaw fullname: Shaw, B. H. organization: University of Calgary – sequence: 2 givenname: L. E. surname: Stiles fullname: Stiles, L. E. organization: Dysautonomia International – sequence: 3 givenname: K. surname: Bourne fullname: Bourne, K. organization: University of Calgary – sequence: 4 givenname: E. A. surname: Green fullname: Green, E. A. organization: Vanderbilt University Medical Center – sequence: 5 givenname: C. A. surname: Shibao fullname: Shibao, C. A. organization: Vanderbilt University Medical Center – sequence: 6 givenname: L. E. surname: Okamoto fullname: Okamoto, L. E. organization: Vanderbilt University Medical Center – sequence: 7 givenname: E. M. surname: Garland fullname: Garland, E. M. organization: Vanderbilt University Medical Center – sequence: 8 givenname: A. surname: Gamboa fullname: Gamboa, A. organization: Vanderbilt University Medical Center – sequence: 9 givenname: A. surname: Diedrich fullname: Diedrich, A. organization: Vanderbilt University Medical Center – sequence: 10 givenname: V. surname: Raj fullname: Raj, V. organization: University of Calgary – sequence: 11 givenname: R. S. surname: Sheldon fullname: Sheldon, R. S. organization: University of Calgary – sequence: 12 givenname: I. surname: Biaggioni fullname: Biaggioni, I. organization: Vanderbilt University Medical Center – sequence: 13 givenname: D. surname: Robertson fullname: Robertson, D. organization: Vanderbilt University Medical Center – sequence: 14 givenname: S. R. surname: Raj fullname: Raj, S. R. 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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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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| 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 |
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