Projects

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 are to improve support and outcomes for people with POTS by developing a self-management support intervention and testing for feasibility. We plan to do 3 phases of research:

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

There will be a project public and patient advisory group to inform and shape the research development. We will keep the website up to date with the progress of the three phases of the project.

We hope this will provide an in-depth exploration of the experience of POTS to inform a supportive self-management programme. To achieve this, we will involve public and people with POTS in the development of the research project through an advisory group and a co-creation workshop.

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

Project Goals

To develop a conceptual framework from the experience of POTS.
To co-produce a self-management support intervention from the conceptual framework.
Test the feasibility of the self-management support intervention.

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The Project Team

Helen Eftekhari

BHF PhD nurse fellow

Helen is a British Heart Foundation PhD nursing fellow and is currently involved in developing a supported self-management programme for people with POTS.

Gemma Pearce

Dr. Gemma Pearce

Chartered Psychologist

Gemma is the lead for the hEDS together and #EDSmaternity projects. Gemma’s expertise is in Health Psychology and has hEDS/HSD herself.

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