I completed my PhD journey by co-creating a supportive self-management programme for people with POTS and undertook a small assessment of its feasibility. The study was called SSPOTS, meaning supportive self-management in POTS. Developing the intervention was undertaken in three phases.
The first phase was to complete a systematic review of the literature to see what aspects are important to include in an intervention to support people with POTS to manage their condition. These are the aspects I found: 1) lifestyle advice, 2) provision of equipment, and 3) support with adherence.
No studies were found on 1) education, 2) psychological well-being, 3) communication needs with health professionals and social support networks, 4) reliable sources of information, 5) training for practical self-management, or clinical action plans, and 5) social support. Studies efficacy’ was hampered by poor research designs, short studies of one day duration, and appropriateness of outcome measures. Significant gaps were identified requiring further research on 1) self-care monitoring activities 2) self-care management activities, 3) provision of education, information and resources 4) addressing psychological well-being and 5) addressing social support. A specific gap exists in the POTS evidence base in nurse led interventions.
In the second phase I undertook the largest qualitative study to date. This involved 44 people from around the UK made up of 25 health care professionals and 19 people with POTS. Here is a link to my 2025 paper publication of this work in the prestigious International Journal of Nursing Studies.
The main findings were that POTS was challenging to live with. People with POTS often experienced multi dismissals of their symptoms meaning people were often delayed in making adaptions to living life with a long-term condition. Validation was important for people who have POTS.
Health professionals who supported people with POTS did this from an individual perspective of either having a key mentor, taking an interest or identifying a need for POTS care. Validation of health professional’s clinical practice was also important, either from people with POTS or colleagues. A wide range of strategies were used to support people to live with POTS, and people with POTS often had to find their own strategies.
From these findings many recommendations were made for a systematic approach to training and services to improve support people with POTS receive. These were taken forwards to the third phase of my PhD, which was a co-design workshop that involved people with POTS identified by the POTS UK charity, and health professionals. The workshop prioritised which strategies should be included in a supportive self-management intervention. These priorities were identified as:
- understanding POTS,
- validation of people with POTS,
- the lifestyle changes,
- looking after mental health,
- communicating about POTS to others.
These priorities were developed into an intervention and refined through a public and patient involvement group. Four facilitators with POTS were trained in the programme and a small study was conducted to find out how the supportive self-management programme worked. Interestingly, the intervention was well received however a logistical issue was found.
The NHS sites that identified people to be part of the study were diagnosing more people with orthostatic intolerance (a significant drop in blood pressure when standing) and syncope (fainting), than they were diagnosing POTS specifically. Therefore, the sites thought the intervention was important but needed to also include these groups of people as they required the same support as people with POTS.
Following my PhD I am hoping to get funding to find out if the intervention can be adapted for people with orthostatic intolerance and syncope.
Doing my PhD has been a great journey and there are so many people to thank. All the people in my interview study were amazing and shared so many rich and insightful experiences of both living with POTS and clinically managing the condition. My public and patient involvement group ((in alphabetical order: H. Baily, J Banks, S Bennett, J Bullingham & D Chapman on behalf of POTS UK Charity, M Ferrar, K Weetman). All the team at POTS UK Charity, including Lesley Kavi and Lousie Thompson. The people who participated in the co-designing workshop and the small feasibility assessment. Finally, my great supervisory team, Dr G Pearce, Professor S Staniszewska and Emeritus Professor Kate Seers.
Thank you to everyone for their support and contributions to this project – you have all been fantastic.
See my project page for more information on other publications during my PhD.
You can download a full free copy of my PhD here.
Funding: British Heart Foundation Fellowship
