How can a better understanding of your bladder cancer diagnosis impact your care? Dr. Ashish Kamat discusses the importance of health literacy, explains the role of shared decision-making in bladder cancer care, and shares key questions that patients and care partners should be asking during appointments.
Dr. Ashish Kamat is a Urologic Oncologist and the Director of the Bladder Cancer Support Program at University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Kamat also serves as the founding President of the International Bladder Cancer Group (IBCG). Learn more about Dr. Kamat.
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Transcript
Katherine Banwell:
Let’s talk about health literacy for a moment. It’s defined by the ability to find, understand, and use information for health-related decisions. Can you talk about why health literacy is essential to accessing quality bladder cancer care?
Dr. Ashish Kamat:
My God, again, this is a favorite topic of mine and some work that I have done over many years along with many of my colleagues and especially through the International Bladder Cancer Group, which is a group of experts across the globe that come together every so often to make recommendations and educational tools for patients.
And we also partner with the World Bladder Cancer Patient Coalition, which is a global entity and, of course, the US Bladder Cancer Advocacy Network, which is very pro-bladder cancer patients and one of the largest support groups. And over the years, what we’ve found in multiple international surveys that have been done, reaching out to not just patients but their carers, and their healthcare team, the physicians, the APPs, the nurses, everyone involved, is that access to healthcare literature and literacy, as you mentioned it, is sorely lacking.
And it’s lacking not just in countries that we think it might be lacking in globally, but even in North America. It’s often reported by patients that they find it hard to access reliable information.
If they access information, they don’t know if it’s biased, if there’s any commercial bias to it, and oftentimes they don’t get pointed in the right direction by their physician. So, I think it’s very important for any patient that’s sitting in front of me to have as much information as he or she can because that’s when it’s true shared decision-making.
If I just tell a patient X, Y, Z and they have to digest it in 10, 15, 30 minutes, and then make a decision, that’s not shared decision-making. That’s just pretend shared decision-making. So, I think access to really reliable and vetted sources is very important.
Katherine Banwell:
Well, patients and their care partners are often overwhelmed following a bladder cancer diagnosis. What advice do you give them at their first appointment?
Dr. Ashish Kamat:
Yeah, so it really depends upon when they get their cancer diagnosis because a lot of times they get their cancer diagnosis when the biopsy results are presented to them, and it’s a shock.
So, patients don’t know they have a cancer diagnosis, and I often tell patients that once you have a diagnosis of cancer, clearly, your physician is going to give you information, so on and so forth. But just take a step back, relax, digest the information, and then go home and talk it over with your family members. You can take a day; you can take a week; it doesn’t really make that much difference. You don’t have to rush into a decision. At that point, really, most patients have a really trusting relationship with their physician, which is really good. I always recommend reaching out to the physician that gave you the diagnosis and asking for resources; ask if you can get another follow-up appointment.
Don’t just go online; don’t just start Googling things because, especially nowadays with the way AI is set up, there are a lot of hallucinations that occur and false information, not intentionally; it’s just AI hallucinations that occur.
And then after you reach out to your physician or your healthcare team, if they point you to sources that they have sort of vetted and know are reliable, that’s great; then you can go down there.
If you need to ask follow-up questions, make a list of follow-up questions. Many of these are available on the resources that I mentioned earlier, and then go back when you’re a little bit more calm. Cancer diagnosis is a huge diagnosis. I never want to make light of it. But take a step back, ask the appropriate questions, and seek the partnership that we really want you to be involved in. Because if I have a patient and their healthcare team at home, their family and loved ones, that is really involved and understands the disease process, it really helps me take care of patients and give them the best outcome.
Katherine Banwell:
Well, are there key questions then that patients should be asking at that first visit?
Dr. Ashish Kamat:
Once they have the diagnosis, at the next step, they should really be asking questions about: What does this mean for me? What does stage mean for me? What is grade for me? Is it life-threatening? If it is, what is the timeline to expect? If it’s not life-threatening, what’s the timeline of treatments to expect?
But more than asking these questions, I think patients need to empower themselves by providing us, their healthcare team, with their goals – their goals of what they want from their treatment. And by that, I mean, I have had patients who came and told me that, “Dr. X, Y, Z was giving me all this toxic chemotherapy and all of that and tried to save my life, but that’s not really important to me.
I don’t care if I live two years or five years, but quality of life is paramount.” On the other hand, I have had patients who tell me, “You know what? I just had a new grandkid, and I don’t care if I lose all my hair, and I lose my leg, my left arm or right arm, but I want to live for the next 10 years. I don’t care.”
So, we really need the goals of treatment, what is important to the patient, to be provided to us. So, it’s not just asking the question, but it’s also providing the information that’s important at that first visit.