Patient insights on cancer care: opportunities for improving efficiency
Findings from the international All.Can patient survey
The patient perspective is too often forgotten in considerations of how cancer care can be improved. The All.Can patient survey gave us a unique opportunity to ask this question directly to those who have had personal experience of cancer.
Almost 4,000 cancer patients and caregivers from more than 10 countries across the world responded to the survey to share their experiences. While most reported that their needs were sufficiently addressed during their care, they highlighted some specific areas where they encountered inefficiency.
We have identified four key opportunities for improvement based on the responses to the survey:
- Ensure swift, accurate and appropriately delivered diagnosis
- Improve information-sharing, support and shared decision-making
- Make integrated multidisciplinary care a reality for all patients
- Address the financial impact of cancer
Ensure swift, accurate and appropriately delivered diagnosis
We asked respondents to choose the one area in which they experience the most inefficiency, and 26% chose diagnosis – more than any other area of cancer care.
Sensitive communication of diagnosis is crucial. Respondents reported issues including lack of empathy and poor timing, such as being told they had cancer on a Friday night and would have to wait until the following week for any further information.
Among respondents whose cancer was diagnosed outside of a screening programme, speed of diagnosis varied significantly depending on the type of cancer. Speed of diagnosis had an impact on respondents’ entire experience of care: those who had waited longest for a diagnosis tended to report more negative views of later elements of their care, particularly in terms of information and support.
There were also reports of cancers being diagnosed as something else. Of those respondents whose cancer was detected outside of screening, 32% said their cancer had been diagnosed as something else – either initially or multiple times. Again, this varied by cancer type.
I had delays in diagnosis, and I felt I was made a fool of about the symptoms I had – they were trivialised as an intestinal virus and anxiety.
Respondent from Italy
Improve information-sharing, support and shared decision-making
Receiving too much information at once could be overwhelming for respondents, who would have preferred to be given relevant information at appropriate points along the care pathway.
Almost half of respondents (47%) did not feel sufficiently involved in deciding which treatment option was best for them, while 39% felt they had inadequate support to deal with ongoing symptoms and side effects.
Information about pain management and palliative care was not always available, with 31% of respondents saying they were not given enough information and care to deal with the pain they experienced. While those of had access to palliative care services reported great satisfaction with this part of their care, others said the option of palliative care was never discussed with them.
Fear of recurrence was an important factor for respondents, with 35% feeling they were inadequately informed about how to recognise whether their cancer might be returning or getting worse.
Peer support has been shown to be beneficial for people with cancer, but 41% of respondents said they were given no information by hospital staff about available peer-support groups.
I don’t want more information, but better information.
Respondent from the United States
Make integrated multidisciplinary care a reality for all patients
The multiple effects of cancer mean that best-practice care involves a well-coordinated multidisciplinary team. Those respondents who received care from specialist cancer nurses reported that the role had been crucial, as the nurse could act as a ‘navigator’ throughout the care pathway.
Allied health professionals such as dietitians and physiotherapists can support cancer patients, but 24% of respondents said that support from such professionals was not always available. Respondents wanted more information about what they could do to support their own treatment and recovery in terms of diet, exercise and complementary therapies.
A common theme in responses to the survey was the need for psychological support, with 69% of respondents saying they needed such support during or after their cancer care. Of those, however, 34% said it was not available.
Cancer affects more than just the individual. Respondents expressed concern for the impact their cancer had on their families, and wanted psychological support for them as well.
I think the psychological involvement part is forgotten. It is true that the main thing is to survive, but it is also necessary to feel accompanied and understood.
Respondent from Spain
Address the financial implications of cancer
Respondents reported the various costs of having cancer – many of which were not directly related to treatment, although 51% of respondents had to pay for some part of their care (either out-of-pocket or through private insurance).
The most commonly reported non-treatment-related costs were travel costs (36% of respondents) and loss of employment income (26% of respondents).
The financial implications of having cancer can reach far beyond the duration of the disease. Respondents reported a negative, and often long-term, impact on productivity – both for themselves and their caregivers. In some cases, a diagnosis of cancer led to lifelong financial insecurity.
It’s impossible to get a bank loan… One is punished for being ill, and it all comes down to luck.
Respondent from Belgium
What’s next?
Now that we have gathered these insights from thousands of patients, we want them to be heard by those in a position to make positive changes. If we want to be true to our aim of delivering care focused on what matters to patients, we must consider these patient insights alongside economic and clinical data, and ensure that they are included in our definitions of efficiency and inefficiency.
We will be taking these findings to policymakers and asking them to take them into account when thinking about health system reform, and about how policies and societies need to adapt to adequately provide for people living with and beyond cancer.