Cancer patients' voices could help improve care across Australia

Australians living with cancer are increasingly being asked a simple but powerful question: how are you?

A paper led by Flinders University and Flinders Medical Centre describes how clinicians routinely listening to cancer patients about their symptoms, wellbeing and quality of life can transform cancer care.

Supporting cancer patients by regularly asking ‘how are you?’ can help them get support sooner, avoid unnecessary hospital visits and improve their overall health outcomes.

This feedback can be tracked through patient reported outcomes, known as PROs, which involve patients directly reporting symptoms such as pain, fatigue, anxiety or treatment side effects, often through digital questionnaires completed at home or during treatment.

Lead author Dr Marianne Clausen says cancer patients are often the first to notice changes in their health, but it can be difficult for them to know if changes are a usual part of treatment, or something they should speak of with their cancer care team.

“Patients live with the impact of cancer and its treatment every day - so, by routinely asking a patient how they are feeling, we can identify problems earlier and respond before they become more serious,” says Dr Clausen from Flinders’ College of Medicine and Public Health and Flinders Medical Centre.

The paper highlights growing evidence that collecting and acting on patient-reported outcomes can improve quality of life, increase satisfaction with care and reduce emergency department presentations.

For people undergoing cancer treatment, small changes in symptoms can sometimes signal larger issues.

Researchers say patients may experience side effects during treatment, such as pain, worsening fatigue, emotional distress or financial difficulty, but these concerns are often unknown by their healthcare team until they become severe. Regular symptom reporting gives the care team the opportunity to identify and address these issues earlier.  

“Cancer care should not only focus on scans, tests and treatments. Understanding how a person copes physically and emotionally is essential to deliver the best possible care,” says Dr Clausen.

Australia is making significant progress with this type of PRO communication. New South Wales has implemented a statewide, patient-reported measures program across more than 50 cancer services, which has collected more than 40,000 patient reports.

Similar initiatives underway include the PREPARES program at Flinders Medical Centre in South Australia. Patients complete short weekly surveys about common side-effects of cancer treatment, and these patient responses are reviewed by their care team, which can provide support when needed.

In addition, a national $22 million PanCancer Initiative is supporting efforts to integrate patient-reported outcomes across the country.

Researchers say the next challenge is to ensure that patient feedback leads to action. Collecting information alone is not enough. Health services need systems, staff and processes that allow clinicians to review responses and provide timely support when problems are identified.

Dr Clausen says giving patients a stronger voice in their care benefits everyone.

“The goal is to make sure every person living with cancer feels heard, has a way to communicate their concerns to their healthcare team, and receives support that reflects their individual needs and experiences. When this happens, issues can be managed early, which is better for patients and the healthcare system,” says Dr Clausen.

As cancer survivorship continues to grow, researchers believe patient-reported outcomes should become a routine part of care across Australia, to help people live better during and after cancer treatment.

The paper, Patient‐reported outcomes in Australian oncology: from emerging practice to system‐wide care by Marianne Holly Clausen, Carolyn Mazariego (University of New South Wales), Julia Lai-Kwon (University of Melbourne) and Ganessan Kichenadasse, is published in the Internal Medicine Journal. DOI: 10.1111/imj.70617

Acknowledgements: M. H. Clausen and G. Kichenadasse are funded by a Medical Research Future Fund grant for the PREPARES project (MRF2025664). C. Mazariego is funded through a Cancer Institute NSW Early Career Fellowship (2024/ ECF1482). J. Lai-Kwon is funded by the PMCC Discovery Partner Fellowship