Developed by the All.Can International multi-stakeholder policy initiative, the survey, unveiled during the opening session of this year’s European CanCer Organisation (ECCO) Summit in Brussels on Thursday, quizzed patients on where and how they had encountered problems in their cancer care and on the broader impact on their lives of being diagnosed with cancer.
Kathy Oliver, co-director of the International Brain Tumour Alliance (IBTA) and vice-chair of ECCO’s Patient Advisory Committee, presented the key findings from the report on the survey.
Around 4000 cancer patients and caregivers participated in the poll, making it the largest international survey specifically aimed at gaining a patient perspective on the inefficiencies of cancer care.
“They told us they had found significant inefficiencies in their cancer care. This is right from the mouths of patients and their caregivers,” said Oliver.
The survey identified several areas where efficiency could be improved including during a patient’s initial diagnosis.
“Over a quarter (26 percent) of those questioned said that their initial diagnosis was where they experienced the greatest inefficiency. When diagnosis was communicated to them it was also not always appropriate.”
Respondents highlighted lack of empathy by healthcare professionals as well as poor timing around diagnosis delivery as key failings.
“These were recurrent themes unfortunately, said Oliver, adding, “Some patients were even given their diagnosis over the phone. We’ve all heard stories about these kinds of situations and it’s just not good enough to be told that you have cancer over the phone.”
“Some patients were even given their diagnosis over the phone. We’ve all heard stories about these kinds of situations and it’s just not good enough to be told that you have cancer over the phone” Kathy Oliver
The study also revealed that problems encountered early on, such as late diagnosis or misdiagnosis, tended to taint a patient’s view of their treatment.
“Misdiagnosis or late diagnosis actually set the tone for some patients’ cancer journeys, affecting them throughout the whole of their pathway. If you get it right to start with, you set people off on the correct path, one that they have confidence in and not one that they are insecure about.”
Among a number of other concerns raised by the report, Oliver highlighted that of information overload, where too much information was given at a single sitting or appointment which was often “overwhelming for patients.”
Around half of those surveyed (47 percent) said they did not feel sufficiently involved in deciding on their treatment options, while disturbingly, just under a third (31 percent) said they lacked adequate support in dealing with pain.
The lack of information on peer-support groups - 41 per cent said they were not provided with information - “is a topic very close to my heart and those of patient advocates, said Oliver.
“If patients are not referred to patient advocacy groups, they lose out on a huge chunk of support, information and advice.”
“These findings are intrinsically important as they express the views of people who are living with a cancer diagnosis day in, day out” Kathy Oliver
Psychological support for patients was also found to be in short supply, with 69 percent of respondents saying they needed psychological support during or after their cancer care, “but about half of these said support simply wasn’t available.”
Respondents also said that the financial implications of a cancer diagnosis were often long-term and negative. “Sometimes a diagnosis of cancer created lifelong financial insecurity and toxicity for the rest of these people’s lives.”
The reports concludes that the problems identified represent an opportunity to improve cancer care and that the cancer community needs to ensure that patient care is given prominence in any future cancer plans, policies and investment decisions.
Oliver ended her presentation by saying, “These findings are intrinsically important as they express the views of people who are living with a cancer diagnosis day in, day out.”
“There’s nothing new here, but what is disturbing is that I’ve been hearing these things for a number of years now. We really have to address these problems and make sure that the next survey doesn’t come up with the same results.”
The findings from the international All.Can patient survey ‘Patient insights on cancer care: opportunities for improving efficiency’ can be accessed here.