Study: Bladder cancer patients get 'crummy care'
July 11th, 2011
12:00 PM ET

Study: Bladder cancer patients get 'crummy care'

Patients with aggressive non-invasive bladder cancer aren't getting the care they need, according to a study published Monday in the online journal Cancer.

Researchers at UCLA's Jonsson Comprehensive Cancer Center found 99% of patients with high-grade bladder cancer that had not reached the muscle weren't getting the recommended follow-up care.

According to medical billing records from 4,545 patients, only one patient got the recommended cancer care says Dr. Karim Chamie, lead author of the study.  He says he considered every recommended treatment regimen and was very lenient and inclusive as to how doctors interpreted specific treatment and surveillance options.

Chamie says it's not a surprise to experts that bladder cancer patients get "crummy care." Dr. Stuart Wolf, a urologist and chair of the practice guidelines committee for the American Urology Association, agrees that not enough is being done by urologists, but he says "the article overstates the degree of noncompliance."

"There is something wrong, whether it's a patient factor, or whether it's a doctor factor is unclear," says Dr. Nicholas J. Vogelzang,  chairman of the Cancer Communications Committee of the American Society of Clinical Oncology. He suggests some urologists aren't taking this type of cancer diagnosis seriously and neither are their patients.

"Urologists have to be more vigorous and enforce their guidelines more," he adds.

Dr. Gary D. Steinberg, who specializes in urology oncology at the University of Chicago Medical Center, agrees. "You've got a significant unnecessary death rate from bladder cancer due to our lack of following well established guidelines."

Although he sees that some urologists are improving their follow-up, says Steinberg, he finds the majority are all over the place with their treatment practices. He believes the health care system in the United States is also partially to blame. "I really do think the overall reimbursement rate to take care of bladder cancer patients is not sufficient."

The study suggests patients need to be more actively involved in their treatment plan. "This is a cancer - if it's high-grade, that has a very high risk of progressing to invasive disease, which can affect your quality of life," says Chamie. "It is up to you the patient to take ownership of your cancer diagnosis, to arrange a strict surveillance and treatment schedule because at the end of the day it's the patient that has to live with their cancer diagnosis."

Wolf says patients should always be questioning their doctor about what's being done and why. "We definitely want to empower patients," he adds. Steinberg suggests patients refer to the Bladder Cancer Advocacy Network for more information.

Dr. H. Barton Grossman, deputy chairman of urology at the M.D. Anderson Cancer Center, also believes, like the AUA spokesman, that the study overstates the number of patients who don't get the proper treatment.

"It's good that they raise the issue but it's not as bad as they say," he says. Grossman, who was not involved in the study, suggests that urologists and patients need to be better informed but that "it's not 99% of the population not being adequately treated." He believes the number is more like 25% of patients and he acknowledges more needs to be done to educate doctors and patients with this prognosis.

"There are different sets of guidelines out there," says Grossman and it can be confusing because none of them are completely the same. Grossman is referring to guidelines from the American Urology Association, the European Association of Urology, and the National Comprehensive Cancer Network.

The study authors suggest the standard guidelines need to be more clearly defined and adhered to.  They suggest they should include:

– Check-ups every three months
– Injecting a cancer-killing drug directly into the bladder
– immunotherapy called BCG
– A cystoscopy (looking at the inside of the bladder & urethra with a scope)
– A urine test to look for abnormal cells

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