ObjectiveTo examine a large UK cohort of patients with postural tachycardia syndrome (PoTS), to compare demographic characteristics, symptoms and treatment of PoTS at one centre compared to the largest patient group PoTS UK and to verify if their functional limitation is similar to patients with chronic fatigue syndrome (CFS).DesignA cross-sectional study assessed the frequency of symptoms and their associated variables.Patients and settingTwo PoTS cohorts were: (1) recruited via PoTS UK, (2) diagnosed at Newcastle Hospitals National Health Service (NHS) Foundation Trust 2009–2012. Patients with PoTS were then compared to a matched cohort with CFS.Main outcome measuresPatients’ detailed demographics, time to diagnosis, education, disability, medications, comorbidity and precipitants. Symptom assessment tools captured, Fatigue Impact Scale, Epworth Sleepiness Scale, Orthostatic Grading Scale (OGS), Hospital Anxiety and Depression Scale, Health Assessment Questionnaire, Cognitive Failures Questionnaire.Results136 patients with PoTS participated (84 members of PoTS UK (170 cohort; 50% return) and 52 (87 cohort; 60%) from Newcastle Clinics). The PoTS UK population was significantly younger than the clinic patients, with significantly fewer men (p=0.005). Over 60% had a university or postgraduate degree. Significantly more of the PoTS UK cohort were working, with hours worked being significantly higher (p=0.001). Time to diagnosis was significantly longer in the PoTS UK cohort (p=0.04). Symptom severity was comparable between cohorts. The PoTS total group was compared with a matched CFS cohort; despite comparable levels of fatigue and sleepiness, autonomic symptom burden (OGS) was statistically significantly higher. The most common treatment regime included β-blockers. Overall, 21 treatment combinations were described. Up to 1/3 were taking no treatment.ConclusionsPatients with PoTS are predominantly women, young, well educated and have significant and debilitating symptoms that impact significantly on quality of life. Despite this, there is no consistent treatment.
The postural tachycardia syndrome, or PoTS, was named and defined in 1993, 1 but is likely synonymous with earlier conditions such as 'The Soldier's Heart', a term coined by Sir James Mackenzie in 1916. 2 Affected patients experience an abnormal response to upright posture resulting in multiple symptoms. 3 Autonomic dysregulation causes inadequate vasoconstriction when standing, resulting in blood pooling within the splanchnic vasculature and limbs, and consequent reduced venous return to the heart. An excessive compensatory tachycardia and increased plasma noradrenaline levels contribute to symptoms, the commonest of which are fatigue, palpitations, light-headedness, headache, and nausea. 3,4 See Table 1 for a list of symptoms.If not adequately treated, PoTS can become a debilitating disorder that can lead to significant disability and impaired quality of life. 1 Forty-one per cent of patients with PoTS describe a viral infection preceding the onset of PoTS, 5 and therefore it was no surprise to clinicians with an interest in PoTS that it would also follow COVID-19 infection. The National Institute for Health and Care Excellence recommends testing for PoTS in patients with long COVID with symptoms of orthostatic intolerance. 6 Parallels can be drawn between long COVID (with or without PoTS) and pre-pandemic PoTS. Both are complex, multisystem conditions with a preponderance in younger and middle-age women, although they can occur in any sex and age. 4,7 There is considerable crossover between symptoms of both conditions. Perhaps because symptoms are multiple and non-specific, both groups of patients commonly describe that their symptoms were not believed or recognised by healthcare professionals, and are often dismissed as anxiety. [7][8][9] The precise pathophysiology of PoTS is not fully understood. It is not a unique disease entity. As with heart failure, it is a syndrome and there is evidence that several mechanisms are involved in PoTS including hypovolaemia, autonomic denervation, hyperadrenergic stimulation, and autoimmune pathology. More than one mechanism can occur in an individual. 1 It is not yet known whether the pathophysiologies of PoTS prior to the pandemic are the same as those found in patients with long COVID and PoTS; further research in this area is necessary. However, to date, the symptom profile of PoTS and response to treatments appear to mirror those of non-COVID PoTS. 5
You may re-use the text of this document (not including logos) free of charge in any format or medium, under the terms of the Open Government Licence. To view this licence, visit www.nationalarchives.gov.uk/doc/open-government-licence/
Background Postural orthostatic tachycardia syndrome (POTS) is an autonomic nervous system disorder causing an abnormal cardiovascular response to upright posture. It affects around 0.2% of the population, most commonly women aged 13 to 50 years. POTS can be debilitating; prolonged episodes of pre-syncope and fatigue can severely affect activities of daily living and health-related quality of life (HRQoL). Medical treatment is limited and not supported by randomised controlled trial (RCT) evidence. Lifestyle interventions are first-line treatment, including increased fluid and salt intake, compression tights and isometric counter-pressure manoeuvres to prevent fainting. Observational studies and small RCTs suggest exercise training may improve symptoms and HRQoL in POTS, but evidence quality is low. Methods Sixty-two people (aged 18–40 years) with a confirmed diagnosis of POTS will be invited to enrol on a feasibility RCT with embedded qualitative study. The primary outcome will be feasibility; process-related measures will include the number of people eligible, recruited, randomised and withdrawn, along with indicators of exercise programme adherence and acceptability. Secondary physiological, clinical and health-related outcomes including sub-maximal recumbent bike exercise test, active stand test and HRQoL will be measured at 4 and 7 months post-randomisation by researchers blinded to treatment allocation. The PostUraL tachycardia Syndrome Exercise (PULSE) intervention consists of (1) individual assessment; (2) 12-week, once to twice-weekly, supervised out-patient exercise training; (3) behavioural and motivational support; and (4) guided lifestyle physical activity. The control intervention will be best-practice usual care with a single 30-min, one-to-one practitioner appointment, and general advice on safe and effective physical activity. For the embedded qualitative study, participants (n = 10 intervention, n = 10 control) will be interviewed at baseline and 4 months post-randomisation to assess acceptability and the feasibility of progressing to a definitive trial. Discussion There is very little high-quality research investigating exercise rehabilitation for people with POTS. The PULSE study will be the first randomised trial to assess the feasibility of conducting a definitive multicentre RCT testing supervised exercise rehabilitation with behavioural and motivational support, compared to best-practice usual care, for people with POTS. Trial registration ISRCTN45323485 registered on 7 April 2020.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.