Cancer survey highlights patient perspective

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A cancer collaboration has launched new research that highlights the potential waste and inefficiencies experienced by cancer patients regarding their diagnosis, treatment, psychological support and medical costs. 

The research was coordinated by the Australian chapter of the global initiative All.Can. It enables a comparison between the lived experience of Australians with cancer to patients in ten other countries.

All.Can is an international, multi-stakeholder initiative dedicated to tackling inefficiency in cancer care across 13 countries.

The All.Can Australia Steering Committee consists of 15 representatives from cancer organisations, including patient advocacy groups, the biopharmaceutical industry, oncologists, nurses, pharmacists, hospitals, health economists, universities and private health insurers

It defines inefficiency in cancer care as anything that does not focus on what matters most to patients. All.Can Australia is focused on ensuring funding and resources are directed to solutions that support patient-centred care. 

850 Australians affected by cancer participated in the global survey. It has revealed key insights about their experience with diagnosis, treatment, support and out-of-pocket costs.

One-in-eight (12 per cent) of respondents whose cancer was detected outside a screening program waited over six months to be diagnosed. 

Half (50 per cent) reported not receiving enough support to manage ongoing symptoms and side-effects during an after treatment while 41 per cent said they did not receive enough understandable information about the signs and symptoms their cancer might be getting worse or returning.

Almost four-in-five (79 per cent) reported paying out-of-pocket costs and 32 per cent travel costs. 

According to All.Can, a key similarity between each country participating in the survey revealed was the finding that patients identified ‘diagnosis’ as the area that caused the most inefficiency. Another common area was the need for psychological support.

In Australia, 64 per cent of respondents reported they needed some sort of psychological support during or after their cancer care. Yet 35 per cent said it was not available. The majority of the 4,000 international survey respondents (69 per cent) shared the same experience.

In Australia, 77 per cent of respondents said they were not asked to be part of a clinical trial, with 86 per cent saying they would have liked the opportunity.

Professor John Zalcberg, who is the Co-Chair of the All.Can Australia Steering Committee and Head of the Cancer Research Program, Department of Epidemiology and Preventive Medicine School of Public Health at Monash University and a consultant medical oncologist at Alfred Health, said this research puts the spotlight on key areas that impact the value patients get out of their car

“The feedback we have received through this global survey highlights a need to look at ways to identify why people are experiencing delays during their ‘diagnosis’ phase. This was identified as a major inefficiency across all involved countries and can impact a patient’s understanding of their condition, treatment options and outcomes,” said Professor Zalcberg.

“This data also provides us with an opportunity to explore ways we can improve how and when we provide information and support to patients during the various stages of their cancer care. A quarter of respondents (28%) said they were not provided with enough understandable information about their cancer care and treatment and 35% did not feel involved enough around decisions regarding their treatment. We also can’t ignore the gap in psychological support that is not only affecting Australians with cancer, but patients globally.”

According to Richard Vines, the CEO of Rare Cancers Australia and Co-Chair of the All.Can Australia Steering Committee, insisting on improving patient outcomes and maximising the resources we commit to cancer care is crucial to driving better patient experiences in the longer term

“Systemic wastage in cancer care is in no patient’s interest. This survey data helps us understand where the gaps are according to patients and health system stakeholders. We can use these findings to help identify efficient solutions which provide the most benefit to patients,” said Mr Vines.

“Our Steering Committee will be building future initiatives taking into consideration the key areas identified by this research. If we are able to connect with key players in our health system to address these common patient pain points, we may be able to drive greater efficiencies and better outcomes for patients.”