New research led by the University of Birmingham and funded by the British Heart Foundation (BHF) could improve the lives of those living with an artificial heart pump.
A left ventricular assist device (LVAD) is a battery-operated, mechanical pump surgically implanted into patients who have end-stage heart failure. It is sometimes given to people who are on the waiting list for a heart transplant, and it helps the failing heart by restoring normal blood flow.
There are around 300 people currently living with an LVAD in the UK. An LVAD can have a significant beneficial impact on a person’s quality of life, being both life-saving and symptom-relieving. However, recipients must undergo open heart surgery, and then have to carry the portable LVAD equipment with them at all times and sleep attached to a monitor, which can impact their quality of life.
Quality of life can be measured using a patient reported outcome measure (PROM), a short questionnaire completed by a person to describe how they are feeling. Using PROMs in clinical practice can help clinicians identify what is going well and what might need addressing in a patient’s care.
However, people living with an LVAD believe that current PROMs are not fit for purpose, and that those used to measure quality of life do not address the wide range of problems that living with an LVAD presents. This includes psychological issues, such as anxieties over the equipment and impact on body image.
Now, thanks to £240,000 funding from the BHF, researchers at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust will work with LVAD patients to produce a new PROM that will better measure their quality of life.
Through the involvement of 150 patients across the UK, the three-year project will include the development of online activities and individual interviews with people before and after having an LVAD to capture the range of issues they face.
They will then turn these insights into questions that form the basis of a new PROM, which will be tested by those living with an LVAD. It is hoped this research will inform and improve the clinical care of those living with an LVAD and even advise future research, policies and design proposals for the device.
James Maund, aged 48 and from Gloucester has been living with an LVAD since 2016 and will participate in this project. The father-of-four said: “I was diagnosed with dilated cardiomyopathy and was told that my heart had enlarged and was functioning at 16%. Doctors told me I would need a heart transplant, but would need an LVAD first to get well enough to be eligible.
“After a high-risk operation, I began living my life with an LVAD. For the first three months, there was a lot of concern, including how I was going to support my family. Psychologically, I struggled with how this would affect my body image.
“It also affected the things I took for granted. I can’t get the device wet, so simple things like a nice soak in the bath or going swimming with my children are out of the question. I also travel a lot for work, so I need to make sure that I take a large amount of equipment with me.
“I have come to terms with living with an LVAD, as without it, I wouldn’t be alive. I’m pleased that the views of people like me will be reflected in the development of the PROM.”
The research will be led by Dr Anita Slade, of the Centre for Patient Reported Outcomes Research (CPROR) at the University of Birmingham. CPROR is supported by the NIHR Birmingham Biomedical Research Centre.
Dr Slade said: “Although an LVAD can extend the life of those living with severe heart failure and improve their symptoms, it does bring its own issues and requires substantial environmental and lifestyle changes for recipients and their families.
“Through discussions with a small group of people who have experience of life with an LVAD we have found that current patient related outcome measures (PROMs) do not address their specific needs and therefore are not able to accurately monitor changes in their quality of life. Understanding this is crucial when developing and evaluating new interventions to improve their health and well-being.
“Developing a new PROM with input from patients will ensure their voices are central to their care, and allow us to better understand how to improve their quality of life now and in the future.”
Dr Lucie Duluc, Research Advisor at the BHF, added: “Implanting an LVAD can be life- saving and also buys more time for those awaiting a heart transplant. Some patients who were too unwell to walk around can see massive improvements to their life once receiving an LVAD, with many able to return to normal activities.
“However, recipients have to adapt to the many changes this makes to their life, and this can have an adverse impact on their health. Patients say that current PROMs do not address this, so this research will be pivotal to better reflect the real experience of people living with an LVAD. By putting patients at the core of this research, this could ultimately help shape the care they receive.
“We can only fund research like this thanks to the generous funding of the public and their support to drive forward our mission to beat heartbreak forever."