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A global survey of patients with kidney cancer identified several key unmet needs, including that nearly 50% of patients said they were not as involved as they wanted to be in developing their treatment plan.

"The aim of the survey was to improve collective understanding and to contribute toward the reduction of the burden of kidney cancer around the world," wrote Rachel Giles, PhD, of University Medical Center Utrecht in The Netherlands and chair of the International Kidney Cancer Coalition (IKCC), and colleagues.

The 35-question survey, was developed by the IKCC and distributed to kidney cancer patients worldwide in 13 languages; a total of 2,012 patients from 41 countries responded. An abstract of the results was presented at the most recent .

Key findings were as follows:

• 51% of patients said they considered themselves to be sufficiently involved in developing their treatment plan

• 41% said that "no one" had discussed cancer clinical trials with them

• 31% said they were invited to take part in a clinical trial

• 56% said they had experienced barriers to treatment

• 50% indicated that they "very often" or "always" experienced disease-related anxiety

• 26% indicated that they "very often" or "always" experienced stress related to financial issues

The full global report is available on the as well as seven individual country reports where at least 100 responses were received.

"The IKCC and its global affiliates will be using the results to ensure that patients' voices are heard," Giles and co-authors wrote. "Actionable points will suggest future projects. Individual countries can use their reports to advance their understanding of patient experiences and to improve local care."

In the following interview, Giles elaborated on the results and discussed the implications.

How would you characterize patient experiences based on the survey results?

Giles: The Global Patient Survey is a biennial survey designed to identify geographic variations in patients' education, experience, and awareness. Specifically, the survey aims to highlight best practices and unmet needs related to patients' access to care, quality of life, and involvement in clinical trials.

What we have learned is that regardless of where in the world patients are, there is room to improve their experiences. There are significant gaps in patients' understanding about their disease at the time of diagnosis, and nearly all (96%) report experiencing associated psychosocial issues, which can be interconnected. For example, when patients don't understand their risk of recurrence or the likelihood of survival, it can result in increased fear of recurrence, general and disease-related anxiety, and a fear of dying.

The survey also reminds us that when it comes to kidney cancer, it is important to look beyond the clinical disease. As healthcare professionals and patient organizations, we need to consider what information patients need and want and how they want to receive it. Because when a patient is engaged, it ultimately improves their overall health.

We also need to consider what is needed beyond medical treatment, from participation in clinical trials to incorporating physical activity into their lives. And we need to think beyond the individual's physical health and include the effects of kidney cancer on their mental wellness.

Was any one survey finding particularly concerning to you?

Giles: The fact that 41% of people are not even having clinical trials discussed as an option is a concern for us. Based on the survey, we can't confirm why this is happening, but there are geographical variations, which may provide some clues.

The survey showed that in the United States only 30% of people said no one talked to them about clinical trials. The number is greater in every other country: France (40%), Canada (48%), South Korea (51%), Japan (58%), the United Kingdom (62%), and India (66%).

We know a barrier to accessing clinical trials is that too often they aren't where patients live, and healthcare teams may not even mention them if they are too far away. More sites, in more cities and more countries globally, would greatly open the pool for improved research, but also give more patients access to new treatments and regimes.

Of note, an overwhelming majority -- 90% in 2018; 70% in 2020 -- of patients stated that they would seriously consider joining a clinical trial if it were offered, meaning that the bottleneck is not patient accrual from the patient end of things. Perhaps site selection allowing for more community centers would facilitate enrollment. Better navigation to trial enrollment and awareness of open trials among nursing and clinical staff should be a focus.

Furthermore, the IKCC has developed a series of decision-aid tools to support shared decision-making, including whether or not to enter a clinical trial. As a coalition of patient organizations supporting kidney cancer patients globally, we embrace the motto: "First-line choice? Think clinical trial! Second-line choice? Think clinical trial! Thinking of a third-line choice or beyond? Think clinical trial!"

What would you most like oncologists to understand about the survey results?

Giles: Improvements in diagnostics and better clinical knowledge have improved both understanding and treatment of kidney cancers. However, there is still a striking need for oncologists and the extended health team to consistently talk to patients about the details of their diagnosis.

Specifically in the 2020 Global Patient Survey, individuals reported a lack of fundamental knowledge and understanding about their kidney cancer diagnosis. At the time of diagnosis, the following were not explained to patients in a way they could understand: likelihood of survival at 5 years (reported by 42% of patients); subtype (34%); risk of recurrence (31%); and stage of cancer (18%).

When patients know and understand more, they are in a better position to make informed decisions about their own care and can also help reduce psychosocial issues associated with uncertainties and survivorship.

Can you tell us more about how you will use the results of the survey?

Giles: IKCC's Global Patient Survey was created to address an evidence gap in research about the kidney cancer patient experience worldwide. With the survey results, we can now identify best practices and the gaps that need urgent attention and develop priority programs and initiatives for IKCC globally. Locally, these data will support national patient organizations.

This is the second global survey you have done. How did the results of this one compare with the previous survey?

Giles: The 2020 Global Patient Survey explored many of the same areas as the first survey, but also examined some areas more deeply and considered how experiences are interconnected and affect patients' outcomes.

For example, in both surveys patients were asked about their knowledge and understanding of their diagnosis and treatment, but the 2020 survey also explored patients' thoughts regarding biopsies. What we found dispels a long-standing belief that patients reject biopsies: of the 48% of patients who were offered biopsies, only 3% rejected them, and only 15% of all people surveyed said they would reject a biopsy in the future.

Quality of life was assessed in both surveys and consistently revealed that nearly all people (96% in both surveys) experienced psychosocial issues associated with kidney cancer. In 2020, we also asked about the role physical activity plays in their well-being.

We know exercise can help prevent kidney cancer and help people living with it lessen the impact of treatment on their physical and mental health, regardless of stage. What the survey showed is that nearly half (46%) of patients aren't meeting the recommended guidelines for physical activity and those who don't are more likely to report psychosocial issues like fear of recurrence, disease-related anxiety, and depression. We feel that is a very actionable take-away point.

Will you do more global surveys?

Giles: Yes. This year IKCC will be working with a multi-country steering group of IKCC affiliate organizations to design and launch the 2022 Global Patient Survey later this year and continue the evidence-based research of the kidney cancer patient experience.

Read an interview about the study here.