Dataset Information

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

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.

SUBMITTER: Shaw BH

PROVIDER: S-EPMC6790699 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Shaw B H BH Stiles L E LE Bourne K K Green E A EA Shibao C A CA Okamoto L E LE Garland E M EM Gamboa A A Diedrich A A Raj V V Sheldon R S RS Biaggioni I I Robertson D D Raj S R SR

Journal of internal medicine 20190416 4

<h4>Background</h4>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.<h4>Objectives</h4>To describe the demographics, past medical history, medications, treatments and diagnostic journey f ...[more]

PMID: 30861229

Similar Datasets

Project description:Background:Postural tachycardia syndrome (POTS) is a complex syndrome of orthostatic intolerance that significantly affects quality of life. The relationship between functional capacity, quality of life, and age remains poorly understood in this patient population. The purpose of this cross-sectional study was to assess the clinical and exercise characteristics of patients with POTS who underwent exercise stress testing as part of cardiac rehabilitation, and to evaluate the relationships between functional capacity with age and sex, as well as the relationship between functional capacity and quality of life. Methods:We included 255 consecutive adult patients with the diagnosis of POTS, by tilt table testing, who underwent exercise stress testing between 2012 and 2017. Clinical and stress test data were obtained from electronic medical records. Results:Of the 255 patients, 232 (91%) were women, with median age 33.5 years. Prevalence of traditional CAD risk factors was low (2% diabetes, 13% hypertension, 7% hyperlipidemia, and 26% smoking history). Mean resting BP was 114 ± 13 mmHg systolic, resting HR was 76 ± 13 bpm, METs achieved 9.2 ± 2.2, and 1 min HR recovery 32 ± 17 bpm. 113 patients (44%) had abnormal functional capacity for age and sex. When analyzed by age groups, younger POTS patients had increasingly lower than expected functional capacity (compared to predicted normals) than did older patients (ANOVA P = 0.0017). The SF-36 physical component of patients with abnormal functional capacity was significantly lower than those with normal functional capacity. (p = 0.006). Conclusions:In this large cohort, patients with POTS were predominantly female (91%) and relatively young. The novel findings are that younger patients with POTS were more likely to have lower-than-average functional capacity for their age and sex compared to older patients, and that abnormal functional capacity was associated with lower quality of life by SF-36 physical component.

Project description:ObjectivesTo establish the recovery priorities of individuals suffering with degenerative cervical myelopathy (DCM).DesignA cross-sectional, observational study.SettingPatients from across the world with a diagnosis of DCM accessed the survey over an 18-month period on Myelopathy.org, an international myelopathy charity.Participants481 individuals suffering from DCM completed the online survey fully.Main outcome measuresFunctional recovery domains were established through qualitative interviews and a consensus process. Individuals were asked about their disease characteristics, including limb pain (Visual Analogue Scale) and functional disability (patient-derived version of the modified Japanese Orthopaedic Association score). Individuals ranked recovery domains (arm and hand function, walking, upper body/trunk function, sexual function, elimination of pain, sensation and bladder/bowel function) in order of priority. Priorities were analysed as the modal first priority and mean ranking. The influence of demographics on selection was analysed, with significance p<0.05.ResultsOf 659 survey responses obtained, 481 were complete. Overall, pain was the most popular recovery priority (39.9%) of respondents, followed by walking (20.2%), sensation (11.9%) and arm and hand function (11.5%). Sexual function (5.7%), bladder and bowel (3.7%) and trunk function (3.5%) were chosen less frequently. When considering the average ranking of symptoms, while pain remained the priority (2.6±2.0), this was closely followed by walking (2.9±1.7) and arm/hand function (3.0±1.4). Sensation ranked lower (4.3±2.1). With respect to disease characteristics, overall pain remained the recovery priority, with the exception of patients with greater walking impairment (p<0.005) who prioritised walking, even among patients with lower pain scores.ConclusionsThis is the first study investigating patient priorities in DCM. The patient priorities reported provide an important framework for future research and will help to ensure that it is aligned with patient needs.

Project description:ObjectiveSickness presenteeism (SP) is a well-documented phenomenon in the current workforce. However, little is known about the SP of future employees (Millennials). We investigated rate and propensity of presenteeism and health-related and work-related correlates in university students to obtain information about the relevance of SP in the future workforce. Sickness presenteeism (SP) refers to going towork while ill.1 DESIGN AND SETTING: We administered a cross-sectional online survey in August 2018 involving self-assessments of health-related and work-related behaviour. As planned, we analysed rates, instances and propensities of presenteeism and absenteeism. The target population was Millennial university students.Results749 German university students, average age 24.7±3.6 years, 49.5% women, mean academic progress 4.5±2.7 semesters, <1% without work experience, 15.4±10.3 mean weekly working hours. Presenteeism rates in the complete sample were 64% at school and 60.4% at work. For the subsample of participants who reported sickness, presenteeism rates were 87.9% at school and 87% at work. Presenteeism propensity among them was 0.67±0.34 at school and 0.68±0.35 at work. SP at school and at work was significantly correlated with subjective health (r=0.29, p=0.000 and r=0.25, p=0.000) and locus of control (r=-0.20, p=0.000 and r=-0.26, p=0.000). Age and sex adjusted multiple regression analysis showed that subjective health explained 9.7% of the variance in SP at school (B=0.049, p=0.000) and 8.1% of the variance in SP at work (B=0.037, p=0.000).ConclusionsThe SP rates of the future workforce were in line with previous research on older employees, whereas the presenteeism propensities we found here were higher. Across all analyses, subjective health proved to be associated with presenteeism. Thus, the relevance of SP will remain constant or might even increase with regard to the future workforce. Programmes offering health education should be implemented to sensitise this generation as early as possible.

Project description:ObjectiveAssess knowledge, attitudes, and practices (KAPs) of a diverse population. Identify barriers and facilitators that inform routine vitamin D supplementation and self-care in the community setting.DesignCross-sectional online voluntary survey. Electronic survey link published on college Qualtrics platform and advertised widely. Study information provided with Participant Information Sheet.Setting and participants556 community dwelling adults across the UK.MethodsThe overarching study included two phases, incorporating quantitative and qualitative methodologies. This paper reports findings from the first phase of the FABCOM-D (Facilitators and Barriers to Community (Healthy) Vitamin D status) study. Online survey questions were iteratively developed after background literature searches and piloted to ensure clarity and ease of understanding. Survey responses summarised using frequencies and percentages, and univariable and multivariable logistic regression models explored for any association. A p-value less than 0.05 was considered statistically significant. The Checklist for Reporting Results of Internet E-Surveys guided reporting. Statistical analysis performed using IBM SPSS software.Main outcome measuresAwareness of vitamin D information sources, health benefits and testing. Attitudes to supplementation, sun exposure and fortification.ResultsThree quarters of the community had some awareness of vitamin D and around half were taking supplements. The two most trusted sources of information included health professionals and the NHS website. Participants were willing to pay for supplements, supporting a self-care agenda. With increasing age, there was significant reduced intake of vitamin D supplements. This aspect needs to be explored further as this could be a concern in deficiency status in the elderly. There was acceptance of food fortification but uncertainty on how to balance food intake with supplementation.ConclusionWe were successful in eliciting views on KAPs around vitamin D from a community population including a large proportion of Black and Minority Ethnic individuals. The community wanted information and guidance to help manage individual vitamin D status, especially for high-risk groups, and on balancing supplementation, food fortification and sun exposure.

Dataset Information

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

Background

Objectives

Methods

Results

Conclusions

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets