Earlier this month the first publication for my PhD was released online and in print by the British Journal of Cardiac Nursing. It has now been made free to access by following this link: https://www.magonlinelibrary.com/doi/full/10.12968/bjca.2019.14.2.91

In keeping with the KISS (Keep it Simple Silly) principles below is an easy to read version. If this interests you please read the full version.

Heart Failure is increasingly common. It is the result of a heart which no long pumps blood as it should. People with this illness commonly experience breathlessness and fluid retention. A major part of the treatment of heart failure is that patients are expected to “self-manage”. There is an expectation that they will be able to monitor their symptoms, make changes to their treatment plan, or seek help if their illness gets worse. However, in medical journals, there is the suggestion that people with heart failure struggle to be successful in their ‘self-management’.

A new theory, “Burden of Treatment” try’s to better understand what it is like for people with chronic illnesses to live with an manage their illness. It is more than just completing the “simple” task of taking the pills. Burden of treatment also includes more complex tasks, from co-ordination of treatments to getting others to help out. It also includes the how lives might have to change due to the treatment and the available resources people have to help them with this work. It is thought that high burden of treatment may lead to poor self-management and illnesses getting worse.

Symptoms of illness also make things harder for people with chronic illness. In the medical journals this is described as separate and unique from burden of treatment. However, clinically and in someone’s personal experience these two things may be more interconnected, but this has not been explored. This may be even truer for someone with heart failure as they have symptoms that do not always improve despite the best medical care available. In addition, the symptoms of heart failure may also make the work of managing illness too difficult to complete.

I think that these two ideas of symptoms and burden of treatment interact with each other within a person’s experience of living with heart failure. I along with the other authors, want to explore these ideas more. We are completing a review of previous research papers. In this review we will look for the presence of symptoms and explore if they are talked about in relation to the work of managing heart failure. We are also completing a research study, SYMPACT which will measure and explore the possible interaction between symptoms and the burden of treatment.

Until more is known this article encourages health professions to think about the work they are asking those with heart failure to do and if they have the ability to complete that work. To read it full detail click on the link below: https://www.magonlinelibrary.com/doi/full/10.12968/bjca.2019.14.2.91

Just under two years ago I had no idea what this would feel like. I had a goal, ambition, and a strategy. Now only a few months later than planned (thanks to COVID), I am beyond happy to share with you all that we have finished collecting data for Phase I and Phase II of this study.

What does this look like?

These folders hold all the completed questionnaires for the over 300 individuals with heart failure who kindly agreed to take part in this study and complete the questionnaires. Thankfully, due to the hard work of the research teams at all of the sites this data is also in electronic form ready for analysis which is next stage.

Although originally, I planned to interview participants for the second phase of the study face to face, COVID changed my plans. Instead I have a combination of face to face, telephone, and video interviews of people with heart failure sharing their experience of living and managing their syndrome. These interviews will be analysed and combined with Phase I data to help tell a more detailed story of this research.

What does this mean?

Completing data collection is another major milestone for this project. It means we are one step closer to completing this research study and my PhD. Thank you to everyone who helped by participating or in the delivery of this study at Portsmouth Hospitals University NHS Trust, Solent NHS Trust, or University Hospital Southampton NHS Foundation Trust. I hope to update you again soon on how the analysis is progressing.

In accordance with the National Institute for Health Research restart framework, SYMPACT is hoping to restart collecting data soon. I don’t have to tell you that our world has changed since the beginning of this year. These changes have been challenging for us all.

I told you that I was pressing pause on SYMPACT due to some of these changes earlier this year and at that point I was hoping I could un-pause it and go back to completing data collection in both Phase I and Phase II with limited changes. Unfortunately, this is not the reality I am now facing.

For lots of reasons, we have made the decision to close Phase I of SYMPACT. So we will no longer be asking people with heart failure to complete the questionnaires. Mainly, we have made this decision as things have changed so much we do not believe that we can put questionnaires completed before the lock down together with ones completed after lock down. Secondly this project is forming a major part of my PhD and I need to finish it!

We will be re-starting Phase II where we ask people who completed Phase I to have a conversation with us about what it is like to live with and manage chronic heart failure in light of any symptoms. I have submitted an amendment to the ethics committee(s) and hope to start interviewing people again soon. How we do this interview is changing and instead of having this conversation face to face we planning on using telephones or virtual calls.

Please bear with us as we make these changes and work on completing the data collection.

By now you are probably sick of hearing about COVID-19 as that is ruling the news and airwaves. So I’ll keep this brief. After a detailed discussion with my PhD supervisors and clinical teams I have made the tough decision to suspend SYMPACT research activities. There is also a chance I will also be suspending my PhD for a period of time if the demand for nurses in the hospital increases (read more on my PhD blog).  

Please be assured if you have participated in SYMPACT, in either the questionnaire’s or the interviews this is only a pause to the activity. I will finish this research and I will keep you up to date on how and when this happens but for now, we are pressing the pause button.

Be kind to each other and stay safe.

Recruitment of the survey part of this study has gone better than expected. You may have seen this from the heart puzzle slowly but surely getting more complete, ahead of schedule! As of today only 14 more people are needed to complete the questionnaire’s to reach my original upper goal and it is only early March. I was hopeful that this would happen so at the end of last year I had started the process of submitting an amendment to both the University of Southampton and the Health Research Authority (HRA) Research Ethic committees (REC). The amended was approved and now we can continue recruiting until May, beyond 350 participants. The more people who complete the first phase of the study (questionnaires) the better an more detailed statistical analysis that we can complete.

None of this would be possible without the generosity and willingness of those who have been approached to help in this study to complete all three of the questionnaires and return them to us. The Research teams at all three of the sites who help identify those who are eligible to participant and support their participation and then enter the data into the database. We are grateful to your help and support. I am looking forward to the analysis and to sharing what we learn with you.

With two of my semi-structured interviews completed, I feel like I can say Phase II has started. As SYMPACT is mixed methods this was always part of the plan to invite people with heart failure to share their experiences through completing a survey (Phase I) and by having a conversation with a researcher (me).

Being a nurse I was sure that the survey would tell me in a discrete and measurable way what was going on in their experience. This confidence came from years of evidence-based learning and a belief in the quantitative methods to tell and explain relationships to us. However, as my PhD journey progressed I began to see more power in qualitative methods. My literature synthesis of qualitative papers confirmed the budding idea that numbers and analysis of those number may not tell us the whole story. I began to get excited about my interviews, where initially I felt more like they were something I was being volun-told to do.

Now a mere seedling in the qualitative research world with only a few interviews under my belt I can see the power of interviews more clearly now. I see that they can provide greater depth to quantitative finding and how by working these two strings together you can get stronger rope. I am so excited to see what this will lead to in my initial thoughts and ideas around any interaction of symptoms and burden of treatment in heart failure.

A special thank you goes to those people with heart failure who have and who will be generous by sharing their experiences with me in conversation. I am more confident now that your in-depth experiences will increase our knowledge around heart failure and how to better support your efforts to live with this syndrome.

This morning when I logged on to the database and saw that I reached 250 on the week that I had predicted I needed to be at 250 to reach my total recruitment goal by the end of my 18 months of recruitment I was so happy. Its hard to describe this but in my role as a research nurse we see many projects (bigger and smaller) who struggle to achieve their goals in their original timelines. Often this is down to things out of their control, but as a emerging researcher I wonder if how the studies are written and how pragmatic they are also plays a role.

I am too early in my career to comment further as SYMPACT is the one and only research study I have designed. So maybe my success is first time luck. However, I did built my study to be pragmatic, easy to run, not to demanding for participants, anchored in my experience of what I knew to be possible in my local research team. My work with the Patient Research Ambassador group at Queen Alexandra Hospital, ensured that my question was refined to focus on the interests of the patients, while still answering an important research question. Throughout the first year my recruitment has never been less than 20 individuals below the monthly recruitment goal. Since my third site has been open we have slowly been closing that gap until today when we matched it! My hope now it that in the next 6 months we start to exceed the original goal!

While how I wrote it and set it up played a big role in achieving this goal. It would not be possible without the support of my PhD Supervisors, the Research department at Portsmouth Hospitals Trust, the Research teams in Queen Alexandra Hospital, University Hospitals of Southampton, and Solent NHS Trust.

Time flies when you are having fun. I can hardly believe it but SYMPACT has been open now for 9 months, which means we only have 9 months left for recruitment. Thankfully, due to the individual sites hard work, recruitment is progressing as I had hoped and planned for. I am so grateful that I took the time to ensure that SYMPACT was adopted on the NIHR portfolio as this has facilitated it being supported by the Research Nurse teams at Portsmouth Hospitals Trust, University Hospitals of Southampton, and Solent NHS Trust. Without this I know my recruitment would not have been so successful.

However, we are not done yet. If you have found this post from a social media post and are interested in helping out with SYMPACT please click on the about SYMPACT page to find out more. For the research teams we need to invite at least 17 people with heart failure, each month, to help SYMPACT reach the goal of 350 total participants. I know we will do this!

Thank you to everyone who has helped us get this far!

As of Wed (29th of July) of this week SYMPACT reached a major milestone. We are halfway to the goal of 350 people with chronic heart failure sharing their experience with us.

A special mention goes to the team at Portsmouth Hospitals Trust, Cardiology Research for recruiting the 175th person into SYMPACT. But without all the hard work from all the participating sites we would never have reached this goal. In fact I think it is important to highlight that SYMPACT has kept pretty close to our original recruitment goals.

This is of course thanks to everyone with chronic heart failure who gave of their time to share their experience of living with this illness. And the research staff from University Southampton Hospitals NHS Foundation Trust, Solent NHS Trust, and Portsmouth Hospital Trusts.

I’m currently working on the interim analysis (Click HERE to read protocol or HERE for more information) in preparation to start the second phase of SYMPACT. If you want to help out or want to know more CONTACT us.

This week on Thursday Solent NHS Trust, opened to inviting people with heart failure to participate in SYMPACT. Lead by Jo Taylor (Research Nurse for Older Persons and Mental Health) as principle investigator and supported by Lindsey Cooke (Research Practitioner). Together they did an amazing job and in their first day had 5 people who agreed to help with SYMPACT! Four of these people have already completed their questionnaires! Very happy and grateful for their help and those people with heart failure who have been so generous to share their experience with me!

Combined with Portsmouth Hospital NHS Trust and University Hospitals of Southampton NHS Foundation Trust, the total number of people who have agreed to help with SYMPACT now stands at 152 with 139 who have had all their data entered into the database by the research staff at each site. We are only 23 away from the halfway mark! At the moment this means we are pretty much at time to target for my original goals.

SYMPACT and my project would not be doing this well with out all the support of the research nurses and CTA’s who are helping me with the project and many others (Wessex CRN, R&I departments, and the Portsmouth Technology Trials Unit)!