A closer look at the NCCN patient guidelines for bladder cancer
Following the release of the National Comprehensive Cancer Network (NCCN) patient-oriented guidelines for bladder cancer in June 2019, medwireNews spoke to panel chair Thomas Flaig, from the University of Colorado Cancer Center in Aurora, USA, about the need for these guidelines, how they can support patients through their often complex journey, and future considerations for researchers.
‘Clear and expert advice’
“Bladder cancer is a common cancer,” with 80,000 new cases per year in the USA – of which three-quarters are in men – and “unfortunately, there are almost 17,500 deaths from bladder cancer every year in the US,” said Flaig.
“It depends on how you measure it, but it is about the sixth most common cancer in the US and worldwide too it is a significant and common cancer,” he said, adding that it is also “a complicated disease to treat,” involving multiple specialties, such as urology, radiation oncology, and medical oncology.
Flaig continued: “For patients who are unfortunately thrust into this when they are diagnosed, it is important to give them clear and expert advice and interaction in this area, so I am pleased that these guidelines are available.”
Accessible information for patients
Flaig explained that the patient guidelines are based on the NCCN clinical practice guidelines for healthcare providers, “which are updated very rapidly when we think there is a change in standard of care.”
But for a patient, these guidelines “are quite technical – they are written by physicians and medical writers for a physician or provider audience – and often patients have difficulty with the abbreviations and nomenclature and so forth,” he said.
So the clinical practice guidelines were “taken through a process to make them more available and written in a way that is more acceptable to patients,” noted Flaig.
The patient guidelines are based on “a very strongly reliable, authoritative source” and give “well-curated advice and perspective” to patients, he summarized.
Supporting patient engagement
With regard to what patients can hope to get from this guidance, Flaig explained that the majority of individuals with bladder cancer have non-muscle-invasive disease, and “their journey in bladder cancer is prolonged for many of these patients.” These individuals will spend “many, many years, if not their lifetime” undergoing regular surveillance, which “oftentimes, if not always” involves repeated cystoscopy conducted by their urologist.
He also highlighted the complexity of the surveillance strategy, which starts at the point that non-muscle-invasive disease is diagnosed; for instance, initial visits are every 3 months, but this may change to a 6-month interval at some point, and so forth as there is a longer period observed without additional recurrence.
“The most important part of [this process] is for the patient to be engaged in their care and these guidelines will help them,” Flaig remarked.
“Medical providers feel that if the patient is engaged in understanding this process and the complexity around it, it is very helpful,” he said.
More options than ever
Shifting gear to muscle-invasive disease, “which is a minority bladder cancer, but represents the lethal form of it, there has been tremendous advance and growth in the last 3 to 4 years,” commented Flaig.
He pointed out that from a scenario where you could argue about whether the last drug approved for bladder cancer was over 10 years ago, “suddenly with the import of the immune checkpoint inhibitors, in the USA at least, there are now five checkpoint inhibitors that are approved in this setting, which has really revolutionized how you treat the disease.”
Flaig also highlighted the approval by the US FDA of the FGFR inhibitor erdafitinib for muscle-invasive disease harboring FGFR alterations.
He explained that information on these new options, and especially about potential side effects that patients need to be aware of, is included in the patient guidelines.
“This disease has become more complicated in a good way because we have more options and more tools, particularly in the metastatic setting,” Flaig remarked.
‘High level of awareness’ of side effects needed
Flaig emphasized that “it is really important for patients to be engaged both in the way they are being followed up, in terms of scans and so forth, but also engaged in their response to the therapy.”
He said that physicians “rely on patients” to tell them how they are tolerating the drug and whether they are experiencing any unusual side effects. This is especially important for immune checkpoint inhibitors, which can have side effects that “are much, much different from chemotherapy,” and we need to have “a high level of awareness of them to detect adverse events from these drugs.”
“Many of the medical oncologists that are administering the immune checkpoint inhibitors were trained in an era when [these drugs] didn’t exist, or immunotherapy was in a very different form,” and “I myself know that I have to be very careful about any new presentations and unusual side effects which may be associated with this class of drugs,” commented Flaig.
He stressed the importance of patient involvement for monitoring adverse events, and added that “one of the things the guidelines will do is give [patients] some background in the understanding of these drugs and the long list of potential side effects.”
‘Optimistic time’ for bladder cancer
Flaig believes that “it is an optimistic time in bladder cancer.”
He continued: “I have been involved in treating patients with bladder cancer for a long period time and things have changed in the last few years for the better. I think as a medical community, as an academic community, we currently feel better able to identify problems and gaps in our understanding of how to treat the disease.
“We can design clinical trials to answer those questions, we can complete those trials, and make a full circle back to give better care to patients.”
Flaig said that “there was a time where I think there was pessimism about our ability to do that,” but the recent approvals have shown otherwise and “I think there is a new spirit of optimism in the treatment of bladder cancer.”
He commented that the challenges now are how to keep the momentum going, how to select the most important questions to be addressed via clinical trials, and how to prioritize the most important trials to complete to benefit patients.
“It is almost a situation of embarrassment of riches going from not having enough questions to having to select the most important questions to benefit patients and optimize care,” concluded Flaig.
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