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

The face of postural tachycardia syndrome - insights from a large cross-sectional online community-based survey
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DOI:
10.1111/joim.12895
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发表时间:
2019-10-01
影响因子:
11.1
通讯作者:
Raj, S. R.
Raj, S. R.
中科院分区:
医学1区
文献类型:
--
作者:
Shaw, B. H.;Stiles, L. E.;Raj, S. R.

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背景:体位性心动过速综合征(POTS)患者有直立不耐受的慢性症状。详细描述这种疾病的人口统计学、临床特征和临床病程的数据很少。这项基于社区的在线调查突出了患者对POTS的体验。它包括迄今为止报告的最大的POTS患者样本。目的描述POTS患者的人口统计学资料、既往病史、药物、治疗和诊断过程。方法对体位性心动过速综合征患者进行在线、社区、横断面调查。如果参与者没有从医生那里得到POTS的诊断,则被排除在外。这些问题集中在患者的经历和旅程上,而不是生理反应。结果共纳入4835例受试者。POTS主要影响育龄期的白色(93%)女性(94%),约一半在青春期(模式14岁)出现症状。POTS是一种涉及广泛症状的慢性多系统疾病,许多患者除POTS外还诊断有合并症。POTS患者经常经历长时间的延迟[中位数(四分位数间距)24(6-72)个月]和误诊,但诊断延迟正在改善。POTS患者最常见的症状有多种,包括头晕(99%)、心动过速(97%)、晕厥前期(94%)、头痛(94%)和注意力集中困难(94%)。结论这些数据为了解POTS患者的背景、临床特征和诊断过程提供了重要信息。这些数据应该作为未来研究的重要一步,旨在对这些患者进行早期和准确的诊断,从而对其症状进行适当的治疗。
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.