Leaving a gift in your will to the PA Foundation can have a momentous impact on the health of not only your fellow Australians, but people all over the world.
Case in point, the generosity and kindness of the late Winifred Allen, who, moved by the care given to her late friend Michael Quayle, by the nephrology team at the PA Hospital (PAH), made the decision to bequest a gift towards nephrology research at the PAH.
That act of gratitude has funded the haemodialysis research of kidney specialist Associate Professor (A/Prof) Andrea Viecelli. Research that’s now transforming the way haemodialysis patients are cared for.
Now based in Zurich, but continuing to collaborate with her colleagues at the Australasian Kidney Trials Network of the University of Queensland based on the PAH campus, A/Prof Viecelli’s project, known as the VALID study, focused on patients’ vascular access function.
Vascular access being the site used to gain access to the patient’s bloodstream so the haemodialysis machine can do the work the patient’s kidneys are no longer capable of doing. The study was informed by almost 1000 patients, caregivers and health professionals from around 60 countries to determine what vascular access outcome was considered most important.
“It came to be vascular access function, because to actually receive dialysis, you need a functioning access, it's like the lifeline for the patient to receive this life sustaining treatment,” A/Prof Viecelli said.
“There are currently about 500 different measures to assess vascular access function, so the question we had to answer first was, which one is the most meaningful to patients and clinicians and whether we can then measure it. My research with patients, caregivers and healthcare professionals showed that it was the number of interventions patients needed on their access to keep it working, or make it work in the first instance. They dread them because interventions mean a threat to their lifeline.
“With the VALID study, funded by the generous bequest by Winifred Allen we wanted to make sure you can measure that outcome as part of clinical practice in a reliable way, because ultimately, we want researchers and clinicians to then measure this outcome consistently in all haemodialysis trials, regardless of their primary outcome, just because it's considered such an important outcome.
“VALID was an international feasibility and validation study to assess whether vascular access function can be measured accurately in different clinical settings.
“In small hemodialysis units, large ones, those in rural areas, big centres, home dialysis versus in centre dialysis, and we compared the accuracy of capturing these data by a clinician on the floor, usually a hemodialysis nurse, with data collected by an expert in the field of vascular access.
“We wanted to assess whether it's accurate enough to get clinical staff to measure this outcome and whether it's feasible. We recruited 699 participants from 10 dialysis units across 7 countries and could show that it was not only feasible but also accurate to measure vascular access function by the number of interventions required to enable and maintain the use of a vascular access for haemodialysis, as part of routine care.”
The work is now influencing research and care globally with several clinical trials and dialysis units measuring this outcome as part of research and clinical practice. The research has won two prestigious awards: the Society for Clinical Trials Sylvan Green Award 2022 for “Enhancing Patient-Partnership in Clinical Trials” and the Emerging Leader Investigator Award from the Australian Clinical Trial Alliance. This project has also informed vascular access guidelines internationally.
Though the work has won awards, led to larger government funding, and conference presentations and international collaborations, what matters most to Andrea is the impact it’s having on patients’ care and their quality of life.
“Catheters, they block a lot and get infected, so they need to be removed and then patients go to the radiology department to have another line put in and that's painful and can have complications coming with it,” she said.
“The most common access is a fistula, which is made by connecting one of your own artery and vein together. Often, these fistulas don’t mature properly in the sense that the vein that you're going to put the dialysis needles in, doesn't grow as big and strong as it needs to be to provide adequate blood flow and strength to put big needles in and do dialysis.
“They can also clot, particularly when there is a narrowing of the vessel and sometimes it's so difficult to fix the problem so that patients actually have to have a new access created.
This is all very time consuming, anxiety provoking for the patients, it's costly, it's interrupting or disrupting their treatment, so they don't get as much and good quality dialysis during that time. It has a massive impact on them and the healthcare system as well.
“We had one patient in the study that had more than 10 interventions in six months”, A/Prof Viecelli said.
“The study has now informed vascular access guidelines, to focus more on the number of vascular access interventions when choosing the best vascular access and caring for patients on dialysis. In other words, the guidelines support that you shouldn't push and push for the same access if it needs so many interventions. That's directly going into clinical care for patients to reduce the number of interventions or at least be considered when choosing the right access for the right patient.”
A/Prof Viecelli could not be more thankful to Winifred for choosing to leave a bequest to kidney research at the PA.
“I just can't be grateful enough for her generous contribution to this work. Without it, it wouldn't have been possible, because this research doesn't get funded by big funding bodies nor industry,” she said.
“That contribution was absolutely critical to be able to conduct this study and has also helped me to get more research funding. I'm really pleased to be able to use her gift to bring back something to patients and ultimately show that this money has really helped them.”
