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All.Can cancer survey highlights patient experience

All.Can international cancer collaboration has launched new research highlighting the potential waste and inefficiencies experienced by cancer patients regarding their diagnosis.

The research was coordinated by the Australian chapter of All.Can to enable a comparison between the lived experience of Australians with cancer to patients in other countries. 850 Australians affected by cancer participated in the global survey, revealing 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 more than six months to be diagnosed. Half reported not receiving enough support to manage ongoing symptoms and side-effects during and after treatment, while 41 per cent said they did not receive enough understandable information about the signs and symptoms that 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 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 4000 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, 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, consultant medical oncologist at Alfred Health and Chair of Australian Clinical Trials Alliance, said this research puts the spotlight on key areas that impact the value patients get out of their care. 

“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 Prof 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 said they were not provided with enough understandable information about their cancer care and treatment and 35 per cent 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.”