ASCO Reading Room | Rachel Giles, PhD, on improving care for kidney cancer patients
A global survey of kidney cancer patients identified several key unmet needs, including that almost 50% of patients said they were not as involved as they wanted in kidney cancer. developing their treatment plan.
“The purpose of the survey was to improve collective understanding and contribute to reducing the burden of kidney cancer worldwide,” wrote Rachel Giles, PhD, of University Medical Center Utrecht in the Netherlands and president 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. A summary of the results was presented at the most recent Genitourinary Cancer Symposium.
The main conclusions were:
- 51% of patients say they feel sufficiently involved in the development of their treatment plan
- 41% said ‘no one’ had discussed cancer clinical trials with them
- 31% said they had been asked to participate in a clinical trial
- 56% said they encountered barriers to treatment
- 50% said they “very often” or “always” experience illness-related anxiety
- 26% said they “very often” or “always” experience stress related to financial issues
The full global report is available on the IKCC website, along with seven individual country reports for which at least 100 responses were received.
“The IKCC and its global affiliates will use the results to ensure the voice of patients is heard,” wrote Giles and his co-authors. “Actionable points will suggest future projects. Individual countries can use their reports to advance their understanding of patient experiences and improve local care.”
In the following interview, Giles expanded on the findings and discussed the implications.
How would you characterize patient experiences based on the survey results?
Gilles: The Global Patient Survey is a biennial survey designed to identify geographic variations in patient education, experience and awareness. More specifically, the survey aims to highlight best practices and unmet needs related to patient access to care, quality of life and participation in clinical trials.
What we’ve learned is that no matter where patients are in the world, there is room to improve their experiences. There are significant gaps in patients’ understanding of their disease at the time of diagnosis, and almost all (96%) report experiencing associated psychosocial issues, which may be interconnected. For example, when patients do not understand their risk of recurrence or likelihood of survival, this can lead to increased fear of recurrence, general and disease-related anxiety, and fear of dying.
The survey also reminds us that when it comes to kidney cancer, it’s important to look beyond the clinical disease. As healthcare professionals and patient organisations, we need to think about 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 participating 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 well-being.
Were there any survey results of particular concern to you?
Gilles: The fact that 41% of people do not even consider having clinical trials as an option concerns us. Based on the survey, we cannot confirm why this occurs, but there are geographic variations, which may provide clues.
The survey showed that in the United States, only 30% of people said no one had told them about clinical trials. The number is higher in all the other countries: France (40%), Canada (48%), South Korea (51%), Japan (58%), United Kingdom (62%) and India (66%).
We know that a barrier to accessing clinical trials is that too often they are not where patients live, and care teams may not even mention them if they are too far away. More sites, in more cities and more countries around the world, would greatly open the pool for improved research, but also give more patients access to new treatments and regimens.
Of note, an overwhelming majority — 90% in 2018; 70% in 2020 – of patients said they would seriously consider taking part in a clinical trial if offered, meaning the bottleneck is not patient hoarding on the patient side of things . Perhaps selecting a site with more community centers would make it easier to sign up. Better navigation to trial enrollment and awareness of open trials among nursing and clinical staff should be a priority.
Additionally, the IKCC has developed a series of decision support tools to support shared decision-making, including whether or not to participate in a clinical trial. As a coalition of patient organizations supporting kidney cancer patients around the world, we adopt the motto: “First-line choice? Think clinical trial! Second-line choice? Think clinical trial! a choice of third line or beyond? Think clinical trial!”
What would you most like oncologists to understand from the survey results?
Gilles: Improved diagnostics and improved clinical knowledge have improved both understanding and treatment of kidney cancers. However, there is still a dire need for oncologists and the extended healthcare team to constantly talk to patients about the details of their diagnosis.
Specifically, in the 2020 Global Patient Survey, individuals reported a lack of basic knowledge and understanding of their kidney cancer diagnosis. At the time of diagnosis, the following were not explained to patients in an understandable way: probability of survival at 5 years (reported by 42% of patients); subtype (34%); risk of recurrence (31%); and the stage of the cancer (18%).
When patients know and understand better, they are in a better position to make informed decisions about their own care and can also help reduce psychosocial issues associated with uncertainty and survival.
Can you tell us more about how you will use the survey results?
Gilles: The IKCC Global Patient Survey was created to fill an evidence gap in research on the experience of kidney cancer patients around the world. With the results of the survey, we can now identify best practices and gaps that need urgent attention and develop priority programs and initiatives for IKCC globally. Locally, this data will support national patient organizations.
This is your second global survey. How do the results of this one compare to those of the previous survey?
Gilles: The 2020 Global Patient Survey explored many of the same areas as the first survey, but also looked at some areas in greater depth and looked at how experiences are interconnected and affect patient 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 patient thoughts about biopsies. What we found dispels a long-held belief that patients reject biopsies: of the 48% of patients who were offered biopsies, only 3% rejected them, and only 15% of all respondents said they would reject a biopsy in the future.
Quality of life was assessed in both surveys and consistently found that almost all people (96% in both surveys) had psychosocial problems associated with kidney cancer. In 2020, we also asked about the role physical activity plays in their well-being.
We know that exercise can help prevent kidney cancer and help people who have it reduce the impact of treatment on their physical and mental health at all stages. What the survey showed is that nearly half (46%) of patients do not meet recommended guidelines for physical activity and those who do are more likely to report psychosocial issues such as fear of recurrence, illness-related anxiety and depression. We feel this is a very actionable take-away point.
Will you do more global surveys?
Gilles: Yes. This year, the IKCC will work with a multi-country steering group of IKCC-affiliated organizations to design and launch the 2022 Global Patient Survey later this year and continue evidence-based research on patient experience with kidney cancer.
Read an interview about the study here.