Suppose a postcard arrives in the mail, a reminder to make an appointment for a mammogram. Either a primary care physician orders a PSA test to screen a man for prostate cancer, or tells him to be screened for lung cancer because of his years of smoking.
Trying to be informed customers, these patients can search for a cancer center online to learn more about screening, when it is recommended, and for whom.
It may not be the best move. Medical associations and the independent US Preventive Services Task Force publish guidelines about who should be screened for lung, prostate, and breast cancer and how often, among many other prevention recommendations. But cancer center websites often deviate from those recommendations, according to three studies recently published in JAMA Internal Medicine.
Researchers found that some sites discussed the benefits of screening, but said little about the harms and risks. Some made recommendations about the age to start screening but obscured when to stop — an important piece of information for older adults.
“If we recognize that these websites are important sources of information, we have room for improvement based on screening according to the guidelines,” said Dr. Behfar Ehdaie, a urologist at Memorial Sloan Kettering Cancer Center in New York and author of the study on prostate cancer screening recommendations.
Screening refers to tests for patients without symptoms or signs of disease, including prostate-specific antigen tests, mammograms, colonoscopies, and CT scans.
The researchers analyzed more than 600 cancer center websites that made recommendations for prostate screening, and found that more than a quarter recommended that all men be screened. More than three quarters indicated no age at which routine testing should be discontinued.
Still, guidelines from both the Preventive Services Task Force and the American Urological Association state that men over age 70 should not be routinely screened because, according to the Task Force’s guidelines, “the potential benefits do not outweigh the expected harms.”
For men aged 55 to 69, both groups insist on individual decisions after discussing benefits and harms with a doctor. However, neither group recommends routine screening for intermediate-risk younger men.
In addition, the study reported that 62 percent of cancer center websites lacked information about the potential harms of screening. Because prostate cancer grows slowly, it often causes no problems. But detection and treatment can lead to complications from surgery or radiation, including a lower quality of life due to incontinence and sexual dysfunction.
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The surveys found similar issues on websites that discussed other cancer studies. In a survey of more than 600 breast cancer centers, more than 80 percent of those who recommended starting age and intervals for mammogram screening violated guidelines. The survey did not address whether the websites contained information about when to stop.
The 2016 Preventive Services Task Force guidelines, currently being updated, recommend screening mammograms every two years for women ages 50 to 74; it found insufficient evidence of benefits and harms for people over 75. The American Cancer Society recommends annual or biennial screening for women over age 55 who are at average risk, as long as they have a 10-year life expectancy.
However, lung cancer screening is only recommended for those at high risk due to a smoking history and older age. Again, an analysis of 162 cancer center websites showed that about half failed to address potential harm.
“We believe it is important to present a balanced report,” says Dr. Daniel Jonas, an internist at the Ohio State University College of Medicine and senior author of the study. “It’s fair to say they could do better.”
Concerns about straining and over-treating certain cancers in older adults have persisted for years. “The downsides of screening come early,” said Dr. Mara Schonberg, an internist and health care researcher at Beth Israel Deaconess Medical Center in Boston. But the benefits of screening can come years later; older patients with other health problems may not live long enough to experience them.
Mammography, for example, includes false positives, leading to repeated mammograms or biopsies, the psychological consequences of which can last for months, Dr. Schonberg demonstrated.
And while most breast cancers diagnosed in women over age 70 are very low risk and may never progress, “almost all are treated with surgery,” said Dr. Schonberg, and sometimes afterwards with radiation and endocrine drugs, all of which can have negative side effects. .
In terms of benefits, the data showed that 1,000 women ages 50 to 74 would have to undergo mammography for nearly 11 years to prevent one breast cancer death.
Why would some cancer center websites omit features such as false positives, repeat tests, radiation exposure, or the after-effects of surgery? Why don’t they include information about the number of lives that screenings actually save at certain ages?
“In the U.S. health care system, the more procedures you perform, the more you get paid,” says Dr. Alexander Smith, a palliative medicine specialist and geriatrics researcher at the University of California, San Francisco. Radiology, which is needed for both lung and breast exams, “is one of the biggest money-makers for health systems,” he noted.
Some websites may have been developed by marketers with little input from health professionals, added Dr. Jonah to it. Talking about risks can discourage patients from clicking the ‘Make an appointment’ button.
On the other hand, it can be difficult to keep older patients from screening, even when research shows little benefit.
dr. Schonberg has developed and tested decision aids – pamphlets to help women over 75 and their doctors make fact-based conclusions about mammograms.
To some extent they work. Older women who receive the pamphlets are more knowledgeable and more likely to discuss the benefits and risks with their doctors; they are less likely to continue screening. But over 18 months, about half of the women who received decision aids got mammograms anyway, as did 60 percent of those who didn’t.
dr. Schonberg explained it as habit or “the need for reassurance”. Patients may also overestimate their level of risk; the average 75-year-old woman has a 2 percent chance of being diagnosed with breast cancer over a five-year period, she pointed out.
In addition, screening choices pose a problem that some elderly patients (and doctors) prefer to avoid: life expectancy. The American Cancer Society and some medical groups use a 10-year life expectancy, rather than age limits, as guidelines for when older patients can stop screening.
“Prognosis is one of the most important factors in decision making,” said Dr. Smith. “Are patients going to live long enough to experience the benefits?” That can be an uncomfortable conversation about age, health and mortality.
How should older people inform themselves about cancer screening? In addition to discussing pros and cons with their doctors — Medicare requires such a visit before it covers lung cancer screening — patients can go to the US Preventive Services Task Force website for the latest assessments.
They can also use ePrognosis, an online guide that Dr. Schonberg, Dr. Smith and colleagues at UCSF developed a decade ago. Most visitors are healthcare professionals, but patients can also use the site’s calculators to determine if they are likely to benefit from breast and colon cancer screening. They can use questionnaires to help determine their likely life expectancy, as well as various decision aids.
Of course, patients can also consult cancer center websites, but in view of what may be missing.