Kidney disease - reporting the right outcomes

Learning how disease can affect people’s identities and impact their families, Professor Allison Tong wanted to help people live well with their disease.

To do this Professor Tong brought together over 5500 patients, their family members and health professionals from more than 100 countries to determine what are the most important outcomes to be reported in dialysis trials. Dialysis is a treatment for chronic kidney disease which is used to filter the blood.

Professor Tong explains that the Standardised Outcomes in Nephrology or SONG initiative found that what mattered most to patients included fatigue, mortality, cardiovascular disease and vascular access (which is what helps connect the patient to the dialysis machine.)

She shares her research with us and explains the next steps in implementing these patient-centred programs.

Video transcript

[Professor Allison Tong speaking to camera]

0:00
My name is Allison Tong. I work at the University of Sydney School of Public Health, but I'm based at the Centre for Kidney Research at the Children's Hospital at Westmead.

0:08
I have received a couple of NHMRC project grants and the one that I'm most proud of is one of my earlier grants looking at establishing core outcomes in hemodialysis. So dialysis is a form of treatment for people who have kidney disease. So if I were to ask you, you know, think of your last healthcare encounter and when you had to make your health decision, what we what was going through your mind? Was it around survival of impact on your family? But if you look at the trials that's been conducted, for example, in hemodialysis, the outcomes that are most often

0:40
reported, things like calcium phosphate

0:43
potassium, things that don't really have any direct meaning for patients. So we've set out on this song initiative to find out what outcomes matter to patients. And what we found are things like fatigue, mortality, cardiovascular disease and also vascular access, which is what helps them to actually be attached to the dialysis machine and making sure that that's functioning well. But now we're focusing much more on getting patients involved in designing different interventions, for example,

1:14
something that might help them to improve their fatigue. We're brought together over 30 patients to provide input and contribution, talking about exercise apps to improve fatigue in dialysis. And we're also looking at doing some work and how to actually get patients involved again meaningfully in partnership to disseminate and implement the research findings.

1:36
To be honest, I do it for the patients. So I do a lot of work interacting with patients and trying to understand their stories. And it's really their stories that captivate and also motivate the research that I do. When I hear about how the disease breaks families, it breaks people's identity. I want to know what I can do to help them live well with their disease.

End of transcript.