An international survey of more than 4000 cancer patients and carers, including 850 Australians, has highlighted the need to tackle shortcomings in diagnosis, treatment and psychological support as well as high medical costs.
The survey is believed to be the biggest-ever international study specifically aimed at obtaining patient perspectives on inefficiency in cancer care, defined as anything that does not focus on what matters most to patients.
Coordinated by All.Can, the first international, multi-stakeholder initiative dedicated to tackling inefficiency in cancer care across 13 countries, the study also provides the first opportunity to compare the lived experience of Australians with cancer to that of patients in 10 other countries.
The global study included responses from 850 Australians affected by cancer, with a quarter of those surveyed from Western Australia. Of the Australians who took part in the survey, 68 percent had breast cancer, seven percent had lymphoma and five percent had prostate cancer while the remaining 20 percent had various other cancer types.
Professor Christobel Saunders, Professor of Surgical Oncology at UWA, who led the WA research component, said the survey provided an invaluable insight into what it was like for patients who had been diagnosed with cancer.
“This survey is so important because it’s pinpointed the areas where we need to improve our care of cancer patients,” Professor Saunders said.
“In order to really put the patient at the centre of care, we first need to understand the things that matter most to patients including their experiences of their disease and treatment and then improve our services based on this information.”
While the majority of respondents reported their needs were sufficiently addressed during their care, the survey identified four crucial areas in need of improvement: swift, accurate and appropriately delivered diagnosis; information, support and shared decision-making; integrated multidisciplinary care and the financial impact of cancer.
The majority of respondents (89 percent) were female with 11 percent male and most (67 percent) were aged 25 to 64, 32 percent were aged 65 or older and one percent were aged 0 to 24.
They identified delays in diagnosis and managing ongoing side effects as the biggest cause of inefficiency. Some reported a lack of empathy from physicians and poor timing—such as being told they had cancer without a family member present or having to wait several days to speak to a specialist.
One in eight (12 percent) respondents whose cancer was detected outside a screening program waited more than six months to be diagnosed while half reported not receiving enough support to deal with ongoing symptoms and side effects during and after treatment.
Some respondents said they felt overwhelmed because too much information was given at once and would have preferred to receive relevant information at appropriate points along the entire care pathway.
In addition, 41 percent said they had not received enough understandable information about the signs and symptoms indicating that their cancer might be returning or getting worse.
Lack of access to psychological support was a common finding with 64 percent of respondents reporting they needed some kind of psychological support during or after their cancer care but, of those, 35 percent said it was not available.
Another common finding was respondents felt there was often a lack of coordination in care—reporting they had no written care plan nor a primary point of contact to whom they could direct questions.