Understanding the future research needs in PoTS

In 2019 I completed a National Institute for Health Research Masters by Research (MRES) through Coventry University. As a practicing clinical advanced nurse practitioner at the time, this provided a unique opportunity to engage in research. Based on clinical practice and my developing interest in Postural orthostatic tachycardia Syndrome (PoTS), during the MRES I evaluated the PoTS evidence base with an evidence map.

Conventionally systematic reviews are undertaken focusing on narrow questions of interest, however exploring the PoTS evidence, the decision was taken to map out the PoTS evidence base. The aim of evidence maps is to look at broad areas of interests and identify gaps in the research to inform future development of research projects. There have been international PoTS researchers calls to improve the PoTS research however previously there was no in depth assessment of what the PoTS evidence base consisted of. Through systematic searching of multi databases (updated until July 2019), using the broad term of postural tachycardia syndrome including any texts with those three words in variation, and limited to adults and English language literature, 779 papers were identified and then mapped into themes, research papers selected and mapped according to research design. The aim of the PoTS evidence map was to understand the research and evidence base, identifying gaps in the research. By adding an in depth review of the PoTS evidence base to the broad calls for action, researchers can use the evidence map to understand what the future research needs are in PoTS and take PoTS research forward.

 In May 2021 the evidence map was published (Eftekhari et al., 2021).

The results identified seven themes, symptomology and quality of life 16.8% (n=132), biomedical topics 16.5% (n=130), co-morbidities 10.3% (n=81), non-pharmacological management 9.8% (n=77), aetiologies 6.9% (n=53), pharmacological management 6.7% (n=53), and clinical management 6.6% (n=52), and 45 subthemes. Quality appraisal of the research studies (n=233) evaluated design, sample size, outcome measures, data analysis and research biases.  74.8% (n=175) of studies were observational designs and 25.2% (n=59) experimental designs (16 using a randomised controlled design, 11 of which had a sample size greater than 21). 47.4% (n=111) of studies only measured duration of effect for <1 day. 11.5% (n=27) of studies reported outcomes using an unvalidated subjective measurement tool. Our findings are that the volume of adult PoTS literature is small and the validity and reliability of the research lacks rigour. The supplementary material of the final literature and PoTS research studies mapped (into the themes) is available online at the published website. The evidence map methodology provides PoTS researchers with a benchmark for research thus far. The paper adds an in-depth research appraisal to the broad calls for action, highlighting the pressing need for multicentre, good quality research in PoTS, to support guidelines and consensus development in the future.

The paper means we need to keep writing and raising awareness about PoTS. The PoTS research community has made a great start to researching PoTS and we now need to take this to the next level by improving the research in PoTS and publish our findings. PoTS research needs to have patient involvement to help us as researchers make research relevant for people with PoTS.

There is free access to the paper until June 12, 2021 by following this link.

The MRES provided me with a great training in research, and inspired me to take my work further. We all need to do more to improve support and raise awareness of PoTS, and by completing the MRES I have had a great opportunity to raise awareness and hopefully influence others. As a clinician undertaking a research training masters has provided a platform to influence care for people to a new level.

Following completion of the MRES, I have been fortunate enough to be awarded a British Heart Foundation Nursing Fellowship to investigate support for people with PoTS. I have a great team of supervisors between University of Warwick and Coventry University supporting me to make this research possible.

Link to British Heart Foundation award.

Link to Helen’s University of Warwick Personal profile.

Citation: EFTEKHARI, H., MADDOCK, H., PEARCE, G., RAZA, S., KAVI, L., LIM, P. B., OSMAN, F. & HAYAT, S. A. (2021). Understanding the future research needs in Postural Orthostatic Tachycardia Syndrome (POTS): Evidence mapping the POTS adult literature. Autonomic Neuroscience, 233, 102808. https://doi.org/10.1016/j.autneu.2021.102808

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