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Helen Eftekhari

Educational background and interests

From September 2020 I embarked on a British Heart Foundation nursing PhD fellowship at the University of Warwick medical school after having been awarded a new and innovative grant for nurses. One day a week Helen continues nursing work at University hospitals Coventry and Warwickshire, running a clinic. Helen's research capabilities and skills grew as a direct response to the clinical academic pathways through UHCW Research and Development work and the iCAHRE (integrated clinical academic health care) pathway. Helen has extensive experience in the advancing nursing practice and specialist nurse role within cardiology. Over a 20-year period Helen has worked in the three specialities of Arrhythmia, Cardiac Rehabilitation and Heart failure. This have given her a strong base on supporting patients with lifestyle changes, monitoring of their condition, living with a long-term condition and self-management. Helen has an MSc in advancing nursing practice and a Master’s in research (funded by the National Institute for health Research) both from Coventry University. For the past ten years, Helen has worked as an arrhythmia and syncope nurse, developing an enthusiasm for arrhythmia care and supporting patients. From this she has formed a passion for supporting people with PoTS (postural orthostatic tachycardia syndrome). This has formed the basis for the PhD project.

Helen is the President for the British Association of Cardiovascular Nursing (BANCC) 2020-2022; is on the editorial board for the British Journal of Cardiac Nursing, and peer reviews for a variety of British and international nursing journals. Helen has presented at local, national, and international conferences both oral and poster presentations and is a nurse advisor to PoTS UK Charity (https://www.PoTSuk.org/) and Arrhythmia Alliance and STARS charities. Helen is the 2022 winner of the British Heart Foundation healthcare hero's award.


PhD project focus

Postural orthostatic tachycardia syndrome (PoTS) is a common condition, affecting about 1 in 500 people. In PoTS there is a very high heart rate when standing up. PoTS affects 5 times more women than men and is diagnosed between the ages of 17-35. People with PoTS have difficulty standing for long times because of the abnormally high heart rate making them dizzy, tired, lightheaded, faint and have difficulties concentrating. This often has a devastating effect on quality of life. Patient groups’ report most people take on average 2 years to understand and come to terms with their condition and feel unsupported in managing PoTS.

A self-management support intervention is where people are supported to live with their health condition. Studies found self-management support interventions in heart conditions improve quality of life and reduce the cost of health care.

The study’s short title is SSPoTS (Supportive Self-management in PoTS). Central to the study is working with people with PoTS and Charities to develop the programme, known as co-production methods.

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 framework on PoTS self-management support based on a series of interviews
  2. Co-create a supportive self-management programme specific for 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.

This research will help people with PoTS in the following ways:

  1. To have a voice about their experiences.
  2. To develop a PoTS a self-management support programme by working together with people affected by PoTS and key professionals.
  3. To improve support for people with POTS.

British Heart Foundation web page

https://www.bhf.org.uk/research-projects/selfmanagement-support-in-people-with-postural-orthostatic-tachycardia-syndrome-PoTS-coproducing-a-s

HEDS together webpage https://hedstogether.com/projects/PoTS-self-management-support/ 

September 2021 Update: Full ethical approval for phase one interviews with people with PoTS and health care professionals has been given. Recruitment has begun for health care professionals and will be beginning soon for people with PoTS (from specific PoTS specialist centres). Updates on the interviews will be posted over the coming period.

November 2021 Update: Interviews of health care professionals are going really well. It's great to find so many health care professionals coming forward and a big thank-you to those who are taking part. People with PoTS are being identified at the identified specialist centres and are beginning to be interviewed. It's great to hear from everyone's experience and capture this. We are forming the SSPoTS public and patient advisory board and will be planning our first meeting over the next month or two. Again, really great to have the group together. We'll be planning a workshop next year looking at the priorities for supportive self-management.

February 2022 Update: Interviews are continuing and it's amazing to have people sharing their experience and journeys for the SSPoTS phase one interviews. Thank you to all and to the nurses at the NHS identification centres who are approaching potentially eligible people for us to contact. The first public and patient advisory board took place and was great to get the group going. We should be planning the workshop for the late summer or early autumn. Please get in touch if you have any questions about the study.

August 2022 Update: Interviews have now stopped recruiting. In total 43 interviews were undertaken, 24 with health care professionals and 19 with people with PoTS. A wide range of people from across the country and from a variety of backgrounds participated. Thank-you to everyone who supported screening for interviewees, especially contacts through PoTS UK who approached their primary care network. Thank you to all the people who participated. All your experiences have provided an in depth insight into the experience of PoTS. The interviews are currently being analysed. The SSPoTS public and patient advisory board continues to provide invaluable insights, supporting the interview sampling strategy and providing insights into emerging interview themes. The workshop is being planned for autumn subject to ethical approval.

January 2023 Update: The first of two workshops for co-defining what the PoTS intervention should be. The aim is to work together for defining components of the supported self-management programme. The first workshop was undertaken in January. This looked at components of self-management relevant for people with PoTS. The components were presented to the workshop. After a thoughtful and lively discussion everyone voted and decided on the priorities for the intervention. A manual for refining at a second workshop is being developed based on the priorities.

March 2023 Update: The second workshop, co-refining of the PoTS intervention was undertaken this month. The aim of this second workshop is to refine with key individuals the proposed supportive self-management programme. Participants reviewed the manual and gave invaluable contributions on what needed to be kept in the manual and what needed further refining. There were great suggestions. Many thanks to everyone who participated in the first and the second workshop. The intervention manual is now being refined . The next step is for ethical approval for the third phase of the study, the feasibility study of the PoTS specific intervention.

June 2023 Update: The results of the interviews were presented in a poster at the EuroHeart international nurses conference and the first workshop results at the national British Cardiovascular Society conference.

September 2023 update: We are now preparing for the feasibility testing of the intervention. The SSPoTS patient and public advisory board have been key to supporting the project, deciding on how we can measure the intervention and developing a facilitators training guide. The combined results of the interviews and workshop will presented at the Heart Rhythm Conference in early October. Thank you to everyone who is part of the project.

February 2024 update: We are now recruiting into the feasibility testing of the intervention. People with PoTS have been trained as programme facilitators. There are specific PoTS clinics we are working with to identify people to take part. Many thanks to the facilitators for undergoing the training and to the health care professionals who are working on this project.


      Publications

      1. Pearce G, Holliday N, Sandhu H, Eftekhari H, et al. Co-creation of a complex, multicomponent rehabilitation intervention and feasibility trial protocol for the PostUraL tachycardia Syndrome Exercise (PULSE) study. Research Square; 2023. DOI: 10.21203/rs.3.rs-2642799/v1.
      2. Camm CF, Joshi A, Eftekhari H, O'Flynn R, Dobson R, Curzen N, Lloyd G, Greenwood JP, Allen C."Joint British Societies’ position statement on bullying, harassment and discrimination in cardiology",
      3. Eftekhari H. (2022) "Ethics are central to nursing care." British Journal of Cardiac Nursing. https://doi.org/10.12968/bjca.2022.0053
      4. Eftkehari, H. (2022) "Guest Editorial: Being internationalist on international nursing day." British Journal of Cardiac Nursing. https://doi.org/10.12968/bjca.2022.0031
      5. Paul, G. Eftekhari, H. (2022) "Implantable cardioverter defibrillator deactivation: opportunities and good practice." British Journal of Cardiac Nursing. https://doi.org/10.12968/bjca.2021.0107
      6. Eftekhari, H. He, H. Lee, D. Paul, G. Zhupaj, A. Lachlan, T. Kuehl, M. Dhanjal, T. Panikker, S. Yusuf, S.
        Hayat, S. Osman, F. (2021) "Safety and Outcome of Nurse-Led Syncope Clinics and ILR-implants" Heart Rhythm http://dx.doi.org/10.1016/j.hrthm.2021.11.006 This article can be accessed free of charge until January 2022 by clicking on the following link: https://authors.elsevier.com/c/1e9EW5VtUyL358Link opens in a new window
      7. Eftekhari H. "A nurse’s impact on patients living with atrial fibrillation." British Journal of Cardiac Nursing. 2021. https://doi. org/10.12968/bjca.2021.0123
      8. Eftekhari H. (2021) "Temporary pacing: an overview". British Journal of Cardiac Nursing. 2021. https://doi.org/10.12968/bjca.2021.0080
      9. Eftekhari H, Maddock H, Pearce G, Raza S, Kavi L, Lim PB, Osman F, Hayat SA. (2021) "Understanding the future research needs in Postural Orthostatic Tachycardia Syndrome (POTS): Evidence mapping the POTS adult literature." Autonomic Neuroscience.233:102808.
      10. Eftekhari, H (2021). “Guest Editorial: Health inequalities in the digital age” British Journal of Cardiac https://doi. org/10.12968/bjca.2021.0054
      11. Ferrar, M. Eftekhari, H. (2020) Nurse-Led PoTS Clinics: A Framework. IN Gall, N., Kavi, L. & Lobo, M. (eds) Postural Tachycardia Syndrome: A concise and practical guide to management and associated conditions. Switzerland: Springer
      12. Eftekhari, H. Bruce, D. (2020) Non-Pharmacological Management. IN Gall, N., Kavi, L. & Lobo, M. (eds) Postural Tachycardia Syndrome: A concise and practical guide to management and associated conditions. Switzerland: Springer
      13. Eftekhari, H. (2020) “Pharmacotherapy in arrhythmias: an overview of anti-arrhythmic drug therapy” Journal of Prescribing Practice 2 (11) (Reprinted British Journal of Cardiac Nursing. 2021. https://doi. org/10.12968/bjca.2021.0044)
      14. Eftekhari H. (2020) “Celebrating the legacy of Mary Seacole.” British Journal of Cardiac Nursing. 2020. https://doi. org/10.12968/bjca.2020.0150
      15. Adlan, A. Eftekhari, H. Paul, G. Hayat, S. Osman, F. (2020)The Impact of a Nurse-Led Syncope Clinic: Experience from a single UK tertiary center” Journal of Arrhythmia. 2020;36:854–862.
      16. McGregor G. Hee S. Eftekhari H. Holliday N. Pearce G. Sandhu H. Simmonds J. Joshi S. Kavi L. Bruce J. Panikker S. Lim, B. Hayat S. (2020) “Protocol for a randomised controlled feasibility trial of exercise rehabilitation for people with postural tachycardia syndrome: the PULSE study” Pilot and Feasibility Studies 6 (157)
      17. Eftekhari H. (2020) “Nursing, COVID-19 and cardiovascular care” British Journal of Cardiac Nursing 2020 15(4) https://doi.org/10.12968/bjca.2020.0040
      18. Eftekhari H. Hayat, S. “Review of postural orthostatic tachycardia syndrome: a predominantly female condition.” British Journal of Cardiac Nursing. 2019;14(12)1–10. https://doi.org/10.12968/ bjca.2019.0090
      19. Eftekhari H. (2019) “The new role of Nursing Associates” British Journal of Cardiac Nursing 14 (9)
      20. Spiers C., Eftekhari H. (2018) “What is Advanced Clinical Practice) British Journal of Cardiac Nursing 13 (9) 402-3
      21. Eftekhari, H. (2018) BANCC report “Highlights from EuroHeart Care 2018” British Journal of Cardiac Nursing 13 (8) p. 403
      22. Eftekhari, H. (2018) “True patient and public involvement in nursing research” British Journal of Cardiac Nursing 13 (40 p 39
      23. Eftekhari, H. (2017) BANCC report “Highlighting Collaborative Work: AF awareness week” British Journal of Cardiac Nursing 12 (12) p 226-7
      24. Eftekhari, H. (2017) BANCC report “EuroHeart Care 2017” British Journal of Cardiac Nursing, 12 (8) p 124
      25. Eftekhari, H. (2017) “Research to practice: benefits of dedicated research training” British Journal of Cardiac Nursing 12 (3) p 139
      26. Eftekhari, H., Hayat, S., Dhangal, T., Osman,F. (2017) “Cardiac Pacing and devices: history, technologies and current innovations” British Journal of Cardiac Nursing 12 (5) p 281-9
      27. BANCC report: “Research to practice: benefits of dedicated research training.” British Journal of Cardiac Nursing, 12 (3), p 139
      28. Eftekhari, H. “A cardiac nurse's glimpse into EuroHeart Care 2015.”British Journal of Cardiac Nursing, 10(11), p 378-79
      29. Eftekhari, H. Paul, G. Osman, F. (2015) “Funding a second specialist nurse post: the business of development and approval” British Journal of Cardiac Nursing 10 (10) p 478–482
      30. Eftekhari, H (2015) “Case study of Brugada syndrome presenting initially as acute myocardial infarction” International Emergency Nursing Volume 23, Issue 4, Pages 329–333
      31. Eftekhari, H, Darlison, L (2014) “Treatment for atrial flutter in a patient with heart failure and mesothelioma: a case study” British Journal of Cardiac Nursing 9 (12) p 495-499
      32. Eftekhari, H, Osman, F (2015) “Quality of life with a cardioverter defibrillator.British Journal of Cardiac Nursing 8 (7), p 1-7
      33. Eftekhari, H. (2012) “The Crow Road: Conversations around ICD deactivation.”British Journal of Cardiac Nursing, 7(9), pp. 425–426
      34. Eftekhari, H., Osman, F. (2011) “Wolff-Parkinson-White Syndrome. Pre-excited AF and Ebstein’s anomaly: A case study” British Journal of Cardiac Nursing . 6 (9), p 444-449
      35. Eftekhari, H. Tanner, G. (2010) “Our experience: Sharing an office.”British Journal of Cardiac Nursing, 6(4), p 190–191
      36. Eftekhari,H., Mason, P., Mattu, R., Trevelyan, J., Needham, T., (2000) “Improving cardiac rehabilitation programme for Asian Patients in Coventry.” Coronary Health Care 4, 210-211

      Supervisors

      • Primary Supervisor Professor Kate Seers (University of Warwick)
      • Professor Sophie Staniszewska (University of Warwick)
      • Doctor Gemma Pearce (Coventry University)

      Collaborators

      • Professor Faizel Osman Consultant Cardiologist and Lead Electrophysiologist University Hospitals Coventry & Warwickshire and Cardiometabolic Institute (Research and Development).
      • PoTS UK Charity

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