The kidney cancer advocacy organization, KCCure, has been collecting survey data on patient experiences to help bridge the communication gap between providers and patients.
KCCure, an evidence-based patient advocacy organization for kidney cancer, has been collecting survey data from patients with kidney cancer to help physicians better understand their experiences on different treatments.
Among other things, the surveys found that many patients are apprehensive to report side effects to their health care team.
“We came up with this idea of doing a patient survey,” said Dena Battle, president and co-founder of KCCure, in an interview with CURE®. “And because a big part of our organization was building patient communities, we had a nice grassroots network of patients who we felt really would participate in that process.”
The organization worked with health care providers to build their surveys, which enabled the physicians to make sure the questions they asked were able to be quantified and publishable.
“But at the same time, bringing in the patient side of things, we were able to ask the questions in a way that patients would understand them and provide feedback that I think would be much more honest than if it was just drafted purely by a doctor,” said Battle.
In KCCure’s first survey, over 450 patients participated and responded to questions regarding adjuvant therapy in kidney cancer. Initially, the providers they worked with advised against asking two open-ended questions because they feared they would not be able to use the information. However, after the survey received over 40 pages of written responses to those questions, they came to a different conclusion.
“We worked with a psycho-oncologist who was able to analyze the responses,” said Battle. “And we published data from that showing patients fears (and) frustrations with their care. So it was really a special opportunity to be able to take these patients stories and translate them into quantitative data that was meaningful to doctors.”
Since then, they’ve explored various research topics in five more surveys. KCCure’s hope is to help bridge the communication gap between providers and patients. Their main focuses are to advance research, provide patient education and improve patient outreach, said Battle.
“Obviously, our vision is a world without suffering from kidney cancer,” Battle explained.
With the largest survey including more than 1,100 patients, Battle said they intend to hone in on what treatment factors are most important to patients. One topic they’ve explored in-depth is side effect management and what patients’ main concerns are related to the topic.
“And that was enlightening, a little bit upsetting and disturbing to know that patients were very reluctant to report side effects to their doctors,” said Battle. “We have some evidence from the survey that shows that they're worried about having their treatment either paused or their dose reduced. And they're worried that maybe they wouldn't get access to the therapy if they talk to their doctors about their side effects.”
Battle said it’s important for providers to be aware of these patient concerns, because if patients are not forthcoming, their side effects could worsen and possibly result in treatment discontinuation. Additionally, the survey results draw attention to the anxiety levels patients face during and after treatment, regardless of the stage of their disease.
“Stage 1 patients still had the same level of fear and anxiety that a patient who had a much higher chance of recurrence would have,” said Battle. “And our hope is that by publishing this data, by increasing awareness about this, that we can increase access to care for patients to give them better counseling services.”
Battle’s perspective on the issue is personal, as she began her advocacy work after her husband died from kidney cancer. She noticed, while attending her first medical conference, that in conversations with providers about changes she wanted to see in cancer care, they told her she needed data to support it. One of the doctors challenged her, asking whether it’s truly the same for all other patients, or if it was just her own experience.
“Which really made me stop and think about my role as an advocate,” added Battle. “And was it fair of me to be speaking on behalf of a patient community when we hadn't really asked the larger patient community what mattered to them? And certainly, my experience was just one experience.”
Battle said her hope is that more organizations will move toward evidence-based approaches using similar techniques to ensure they’re truly speaking on behalf of patients. By getting the true voice of a patient community, they’ll know how to best advocate on their behalf, she said.
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