An international survey of patients with cancer has highlighted inefficiencies in diagnosis, as well as lack of information and psychological support. Only half of the patients surveyed felt that they were sufficiently involved in decision making.
The survey was conducted in almost 4000 patients and their caregivers from 10 countries, including Australia, Belgium, Canada, the United Kingdom, and the United States.
It also found that, regardless of their health system, over half of respondents had to pay for part of their cancer care themselves.
The survey was carried out by the industry-sponsored All.Can initiative report, and published July 23.
"It is so important that, as physicians, we listen to what patients are telling us in this survey," said Christobel Saunders, MBBS, professor of surgical oncology at the University of Western Australia in Perth, and All.Can member.
"Each of the areas identified represents an opportunity to improve cancer care for patients and provide truly patient-driven care," she said in a statement.
"You look at patient perspectives in a survey but they need to be brought in much, much more into the way we plan and reform cancer care," commented Suzanne Wait, PhD, managing director of The Health Policy Partnership, which acted as secretariat to the All.Can initiative.
"I think everyone else needs to listen more and advocate, all of us, because many of us will be cancer patients in the future," she said.
What Matters Most to Patients
The All.Can initiative was started in late 2016 with the aim of bringing together health policy experts, researchers, clinicians, patient advocates, and others to better define and improve efficiency in cancer care.
Rather than focusing on efficiency from a healthcare cost perspective, the initiative sought to define efficiency in terms of what matters most to patients across the entire care continuum, alongside the broader impact on their lives.
Following a literature review and exploratory patient interviews, All.Can worked with Quality Health, a UK-based organization that manages healthcare surveys and questionnaires, to develop a questionnaire that covered the main themes of cancer care.
This questionnaire was administered to current and former cancer patients of all ages in Australia, Belgium, Canada, France, Italy, Poland, Spain, Sweden, the UK, and the US.
Caregivers, both current and former, were also invited to take part on behalf of patients who were unable to respond properly or who had died.
In all, 3981 individuals completed the survey, with the majority coming from Poland (29%), Australia (22%), the US (13%), Belgium (10%), Canada (9%), and the UK (9%).
The vast majority (89%) of respondents were current or former patients. The average age was 55 years, and 80% were female.
The most common types of cancer were breast (42%), gynecologic (11%), hematologic (9%), and colorectal/bowel cancers (6%).
Most Inefficiency Was at Diagnosis
When patients were asked where they experienced the most inefficiency during their cancer care, 26% of respondents said that it was during diagnosis, and that proportion rose to 31% among US respondents.
Over half (58%) of patients had their cancer diagnosed outside of a screening program, and 32% of those reported that their disease was initially diagnosed as something else.
There were substantial variations in time to diagnosis, however. For example, among those diagnosed outside a screening program, 80% of patients with prostate cancer — but only 25% of patients with head and neck cancer — said they were diagnosed within a month.
Among the US respondents, 12% who were diagnosed out of a screening program waited more than 6 months for their diagnosis.
These figures are "actually quite shocking," Wait commented.
"Improving the diagnostic process is so key because, of course, we know that, for many cancers, early diagnosis equates to better survival," she said, "not to mention the angst and agony that patients go through while waiting to be diagnosed."
Shared Decision Making
When the questionnaire addressed the issue of shared decision making, about half (53%) said they felt they were sufficiently involved. However, 31% of respondents said they were not given adequate information in a way they could understand about their care and treatment.
The picture was better in the US, with 59% saying they felt sufficiently involved in decision making and 25% saying they were not given adequate information.
However, 39% of respondents overall (and 31% in the US) said they did not have adequate support to deal with ongoing symptoms and adverse effects, and 31% said they lacked information to help deal with pain.
Worryingly, 35% said they felt inadequately informed about recognizing when their cancer might be recurring or progressing.
Wait told Medscape Medical News that these findings were echoed by the answers to the qualitative, open-ended questions in the questionnaire.
"A lot of the patients were saying, 'I had these side effects and I didn't know what they were. I didn't know if they were serious. I wasn't given a plan to deal with them,' " she said.
"That can have an impact on how they respond to treatment, it can have an impact potentially on their adherence to treatment, and it can be very distressing in already distressing situations," she added.
However, Wait commented that this is "not pointing a finger and going to doctors and saying they're not doing the right job".
Rather, it underlines that the standard 15 or 20 consultations is just not enough, in that patients don't necessarily get all the information or even are able to digest all the information when they're there".
"It's when they go back home that all the questions arise, so the key message for me there is [this]: put in place ancillary services, for example specialist cancer nurses, nurse navigators or cancer navigators...who can play the companion role for patients and their families, and answer questions in between those doctor visits," she said.
Lack of Psychological Support
Unsurprisingly, 69% of patients said that they needed psychological support during or after their cancer care, but only half of them received it. There was no psychological support for 34% of patients who said they needed it.
A quarter (24%) of respondents said that they did not have access to support from healthcare professionals such as dietitians and physiotherapists.
Wait pointed out that guidelines recommend that such support be offered from diagnosis onward to every single cancer patient, but this survey shows that "it's just not".
"Any why is it not? Mostly because there aren't the skilled staff available," she commented.
However, she also believes that sometimes, it is simply a case of the care team not thinking about offering psychological support.
This was reinforced by the finding that 41% of patients were not given information on available peer support groups.
Half Paying for Their Own Cancer Care
Despite the survey covering a range of different healthcare systems and, consequently, payer models, 51% of patients said they had paid for some of their cancer care, whether through out-of-pocket expanded or private insurance.
This figure rose to 68% among US respondents, with 55% paying for private health insurance, 6% for care and treatment not covered by insurance, and 4% paying to avoid delays.
Significant travel costs were also incurred by 36% of respondents overall (44% in the US), and 26% overall said they experienced a loss of employment income (rising to 31% in the US).
Wait said that this means that many patients are not able to get back to a semblance of normality after their cancer treatment, with the impact sometimes being lifelong.
"We have an obligation as a society to protect people who have cancer from any form of, for example, discrimination in employment or insurance, but also to help them get back on their feet," Wait commented.
That will only happen, she said, "if we join the dots and don't just think of this as a health condition but we also think about the social implications".
Aspects of Patient Care That Are Important
Wait noted that there is "movement" toward recognizing that the aspects of care highlighted in the study are important, and there are some "fantastic pilots" of ways in which the patient perspective is taken into consideration.
"But sometimes we pay lip service to that and we say it's important," she continued, but we don't necessarily, when it comes to where are we going to focus resources in terms of improving cancer care, think this is a priority."
"We need to integrate the insights and recommendations that come from this report into decision making. That's the gap."
Wait believes that, to achieve that, the patient perspective needs to be examined in parallel with economic data and clinical trial data.
The international All.Can initiative is made possible with financial support from Bristol-Myers Squibb (main sponsor), Roche (major sponsor), Amgen, MSD and Johnson & Johnson (sponsors), and Baxter (contributor), with additional nonfinancial (in kind) support from Helpsy, Intacare and Goings-On.
Patient insights on cancer care: opportunities for improving efficiency. Published July 23, 2019. All.Can Patient Survey
For more from Medscape Oncology, follow us on Twitter: @MedscapeOnc
Medscape Medical News © 2019
Cite this: Cancer Patients Report Lack of Info and Support - Medscape - Aug 02, 2019.