Older patients with advanced bladder cancer ‘want to be active participants in their care’
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Bladder cancer disproportionately affects older individuals, with diagnosis occurring at a median age of 73 years.
However, much of the data around care planning for patients with bladder cancer involves those who are younger than the typical patient with this disease, according to Elizabeth Kessler, MD, member of University of Colorado Cancer Center and associate professor of medical oncology at CU School of Medicine.
“Most studies enroll patients who are of a younger age than the actual representative population,” Kessler told Healio. “That’s probably due to a number of factors — maybe the study design requires perfect renal or liver function. So, it’s harder to apply the available data to these discussions with older people.”
Knowledge gaps around the preferences of older patients with advanced bladder cancer prompted Kessler and colleagues to conduct a study aimed at better understanding this patient population. The research stemmed from Kessler’s previous studies, which received support from an American Cancer Society Clinician Scientist award.
In the current study, Kessler and colleagues interviewed 10 older patients with advanced bladder cancer, individually and through focus groups. Several had received a prior diagnosis of localized bladder cancer that either progressed or recurred.
Kessler spoke with Healio about the results of the qualitative study and discussed how these findings might be used to better serve older adults with advanced bladder cancer.
Healio: What are some of the common beliefs regarding older patients with advanced bladder cancer?
Kessler: There have been assumptions that people who are older might be more deferential and prefer a paternalistic style of care. There isn’t much data to support or refute that. We have tons of data from the Institute of Medicine, as well as plenty of other studies, suggesting that people with cancer want to participate in discussions with their provider. However, there is less data about how older people with cancer might want to participate in these discussions. We hoped to offer a bit more perspective on that from our smaller group.
Healio: How did you conduct the study?
Kessler: We performed qualitative interviews with older adults who had been diagnosed with advanced bladder cancer. Many of these patients had either bladder cancer that was originally in the superficial layer of the bladder and then advanced to become more invasive or metastatic, or were diagnosed with metastatic or incurable advanced bladder cancer at the start. Some of them had many years of experience with their cancer diagnosis and some had a shorter timeline. We invited them to include their care partners, often a spouse, in the interviews if they desired. We explored some of their priorities in communicating with providers and how they made their decisions as patients with advanced bladder cancer. We analyzed that data to see if some themes arose.
Healio: What did you find?
Kessler: We had originally set out to have focus groups for the interviews but, due to COVID, we switched to one-on-one interviews. Most of our participants were men and median age was 74 years, both of which are very representative of the bladder cancer population.
Patients shared with us that they had memories and thoughts about key phrasing and communication with their providers about their cancer diagnosis. They shared their thoughts about certain terms and buzz phrases. For example, when their provider said, “This isn’t a surgery thing now, but a chemotherapy thing,” they knew something had changed. There were phrases about their cancer or cancer treatment that patients really picked up on. For example, if a provider said, “This is rare,” a lot of patients perceived that as bad or difficult to treat. That’s not always the case in medicine. I think it underscored the fact that words do matter. The way things are shared, the way that information is conveyed is often remembered years and years later.
The other aspect was expectation setting when talking about treatment planning, treatment toxicities and prognosis. Patients shared with us how important it was to understand how their treatment might impact their longevity or ability to keep doing things. Were they going to be limited in their exercise or activity, or should they limit themselves? They really wanted to have as much information as possible, as early as possible.
Healio: What information did you get from the care partners?
Kessler: They may or may not have had the same preferences as the patients for receiving information. In some instances, the care partner acquired most of the information and asked most of the questions. In one case, we interviewed the care partner of a deceased patient. She shared a number of observations on how she picked up on clues or information that her spouse wasn’t necessarily seeing the same way.
What we learned, and what has been supported in other instances, is that it’s quite rare for patients to have an individual experience where it’s a one-on-one scenario with their physician. It’s a complex network of people who are involved in decisions, support and sharing information. We learned that often, the patients were meeting with physician assistants, nurse practitioners and nurses. It’s often part of their care, and they were very open to that, as well. As long as the team felt cohesive, the degree of the person caring for them didn’t necessarily matter.
We were very interested in how to best support these patients moving forward, and in designing a framework for providing and sharing information with older people with advanced bladder cancer. So, we asked some questions that would help us with future design. The design we have in mind utilizes advanced practice providers in the clinic, and the patients and care providers were very open to this model and working with the other people on the team.
Healio: What did you conclude based on your findings?
Kessler: The older patient population isn’t that much different than other people with cancer. They want to be active participants in their care; they want to have clear expectations and involve others in the communication process. This further supports existing data, but it’s nice to have information in this specific population where we don’t know much.
Healio: What is next in your research on this?
Kessler: We have an ongoing pilot study using a care planning framework called ABC 123. It touches upon some of the key themes that relate to older patients with advanced bladder cancer. For example, how independent is the patient in their function? How can we estimate whether that might change on treatment? How can we estimate for patients the potential toxicity of chemotherapy?
Then we have a guided priorities discussion with them and whoever they might want to invite. The goal of this is to really learn about them and their priorities at the outset. The information from this study helped lay the groundwork for this next step. We’ll test this pilot framework for feasibility as well as acceptability to patients and clinicians.
References:
- Jordan SR, et al. J Geriatr Oncol. 2022;doi:10.1016/j.jgo.2022.01.010.
- Older adults with advanced bladder cancer prioritize honest information about what to expect (press release). Available at: https://www.eurekalert.org/news-releases/958257. Published July 7, 2022. Accessed July 11, 2022.
For more information:
Elizabeth Kessler, MD, can be reached at University of Colorado Cancer Center, 1665 Aurora Court, Aurora, CO 80045; email: elizabeth.kessler@cuanschutz.edu.
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