Co-producing a supportive self-management intervention for people with Postural Orthostatic Tachycardia Syndrome (POTS)

Project Summary

Postural Orthostatic Tachycardia Syndrome (POTS) is a common condition, with an estimated minimum prevalence of 0.2% (n~135,000), which is rarely diagnosed. POTS can be debilitating, with a significant impact on quality of life, incurring a substantial socio-economic burden. In POTS there is a significant heart rate response to standing (>30 beats per minutes), making standing up difficult. Symptoms include light-headedness, poor concentration, extreme fatigue and palpitation. The average age at diagnosis is between 17-35 years, affecting 5 times as many young women as men. Self-management support programmes in other heart conditions have improved quality of life whilst reducing health care costs and the socio-economic burden. Developing a supportive self-management intervention in POTS could have a significant impact on quality of life and reduce health care costs.

The project’s aims were to improve support and outcomes for people with POTS by developing a self-management support intervention and testing for feasibility. We completed 3 phases of research:

1. Developed a conceptual framework on POTS self-management support based on the current evidence base,
2. Co-created a programme for people with POTS,  
3. Tested to see if the programme is acceptable to people with POTS.

There was a project public and patient advisory group throughout the research that worked with us to inform and shape the research development.

This PhD research has now been completed and Helen has successfully passed her PhD viva!

We are now in the process of publishing all of the research findings so watch this space.

Publications

This publication maps out the current literature that exists on PoTS and what research is needed moving forwards to fill these gaps.

A systematic review has been carried out using this protocol and currently under review for publication.

A protocol describing the three planned phases to develop the self-management intervention: 1) qualitative study and taxonomising components of self-management support, 2) co-creation workshops to examinine and prioritise what should be in a self-management support intervention and 3) initial testing of the intervention for feasibilty

This publication is from the first stage described in the above protocol – the qualitative study. 44 interviews were carried out with people with POTS and healthcare professionals about their experiences of the healthcare system. Three core themes were found: 1) A challenging condition, 2) POTS healthcare provision – services by accident not design, and 3) The need to validate experiences. Health professionals experienced challenges in their clinical self-efficacy. POTS care was driven by individual human agency and interpersonal relationships. People with POTS took individual responsibility for their self-management but were impacted by gender inequalities, a medical model prioritising guidelines, and a poor evidence-base. There is a requirement for a system wide recognition of POTS to move the landscape away from one of individual responsibility.

Contributors

• Primary Doctoral Supervisor: Professor Kate Seers, University of Warwick.
• Secondary Doctoral Supervisor: Professor Sophie Stanizewska, University of Warwick.
• Third Doctoral Supervisor: Dr Gemma Pearce, Coventry University.
• Dr Lesley Kavi: General Practitioner and POTS UK charity Trustee
• Dr Sajad Hayat: Consultant Cardiologist, Qatar
• Dr Sandeep Panikker: Consultant Cardiologist, UHCW
• Professor Faizel Osman: Consultant Cardiologist, UHCW

Funder: British Heart Foundation

References

Eftekhari, H., Pearce, G., Staniszewski, S. & Seers, K. Understanding the experiences of people who have Postural Orthostatic Tachycardia Syndrome (POTS) and the health professionals who care for them: a grounded theory study. International Journal of Nursing Studies.  https://doi.org/10.1016/j.ijnurstu.2024.104986

H. Eftekhari, G. Pearce, S. Staniszewska, K Seers (under review, pre-print published on research square) STUDY PROTOCOL Co-producing a supportive self-management intervention for Postural Tachycardia Syndrome (POTS) and testing for feasibility: an exploratory sequential three phase study

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: Basic and Clinical, 233:102808. doi: 10.1016/j.autneu.2021.102808 (access to full pdf here)

Eftekhari, H., Pearce, G., Singh, A. Systematic review of components for supportive self-management for people with postural tachycardia syndrome (PoTS). (2022) PROSPERO, University of York Centre for Reviews and Dissemination, University of York. CRD42022309746 (link)