Let’s say a postcard arrives in the mail, a reminder to schedule a mammogram. Or a primary care doctor orders a PSA test to screen a man for prostate cancer, or tells him that because of his years of smoking, he should be screened for lung cancer.
These patients, trying to be knowledgeable customers, can search online for a cancer center to learn more about screening, when it is recommended and for whom.
It may not be the best decision. Medical societies and the Independent Task Force on Preventive Services of the United States publish guidelines on who should be screened for lung, prostate and breast cancer and how often, among many other recommendations of prevention. But cancer center websites often diverge from these recommendations, according to three studies recently published in JAMA Internal Medicine.
The researchers found that some sites discussed the benefits of screening but said little about the harms and risks. Some offered recommendations on when to start screening, but glossed over when to stop – important information for older people.
“If we recognize that these websites are important sources of information, based on guideline-based screening, we can still improve,” said Dr. Behfar Ehdaie, a urologist at Memorial Sloan Kettering Cancer Center in New York and author of study on prostate cancer screening recommendations.
Screening refers to testing for patients with no 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 provided recommendations for prostate screening and found that more than a quarter recommended that all men be screened. More than three-quarters did not specify an age at which to stop routine testing.
However, the guidelines of the Preventive Services Working Group and the American Urological Association state that men over the age of 70 should not be routinely screened because, according to the working group’s guidelines, “the potential benefits do not outweigh the expected harms”.
For men aged 55 to 69, both groups require individual decisions after a discussion with a clinician about the pros and cons. However, neither group recommends routine screening for young men at average risk.
Additionally, according to the study, 62% of cancer center websites did not include 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 therapy, including reduced quality of life due to incontinence and sexual dysfunction.
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Investigations revealed similar issues on websites dealing with other cancer screenings. In a survey of over 600 breast cancer centers, more than 80% of those recommending a starting age and intervals for screening mammograms contradicted the guidelines. The study did not look at whether the websites contained information about when to quit.
The Preventive Services Task Force 2016 Guidelines, currently being updated, recommend screening mammograms every two years for women aged 50 to 74; it found insufficient evidence of benefits and harms for people aged 75 and over. The American Cancer Society recommends annual or biannual screening for women over 55 at average risk, provided they have a life expectancy of 10 years.
However, screening for lung cancer is recommended only for those at high risk due to his smoking history and advanced age. Here too, a analysis of 162 cancer center websites showed that about half did not address potential harm.
“We think it’s important to present a balanced account,” said Dr. Daniel Jonas, an internist at Ohio State University College of Medicine and lead author of the study. “It’s fair to say they could do a better job.”
Concerns about overtesting and overtreatment of certain cancers in older adults have persisted for years. “The harms of screening happen 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 accrue years later; older patients with other health conditions may not live long enough to experience them.
With mammography, for example, harms include false positives, leading to repeat mammograms or biopsies, psychological consequences which can last for months, Dr. Schonberg’s research has shown.
And while most breast cancers diagnosed in women over 70 are very low risk and may never progress, “almost all are treated by surgerysaid Dr. Schonberg, and sometimes afterwards with radiation and endocrine drugs, all of which can have negative side effects.
In terms of benefits, data has shown that 1,000 women aged 50 to 74 would have to have a mammogram for almost 11 years to avoid a death from breast cancer.
Why do some cancer center websites omit possibilities such as false positives, repeat testing, radiation exposure, or after-effects of surgery? Why don’t they include information on how many lives the screenings actually save at particular ages?
“In the American healthcare system, the more procedures you perform, the more you get paid,” said Dr. Alexander Smith, a palliative medicine specialist and geriatrics researcher at the University of California, San Francisco. Radiology, which is needed for lung and breast screening, “is one of the biggest sources of revenue for healthcare systems,” he noted.
Some websites may have been developed by marketers with little input from medical professionals, Dr. Jonas added. Talking about the risks might discourage patients from hitting the “book an appointment” button.
On the other hand, it can be difficult to dissuade older patients from getting tested, even when research shows little benefit.
Dr. Schonberg has developed and tested Decision Support Tools – brochures to help women over 75 and their doctors reach evidence-based conclusions about mammograms.
In a certain way, they work. Older women who receive the brochures are better informed and better able to discuss the benefits and risks with their doctor. they are less likely to pursue screening. But over 18 months, about half of women who received decision aids still had mammograms, as did 60% of those who didn’t.
Dr. Schonberg explained it as a habit or “the need for reassurance”. Patients can also overestimate their risk level; the average 75-year-old woman has a 2% chance of being diagnosed with breast cancer over five years, she pointed out.
Additionally, screening choices involve an issue that some elderly patients (and physicians) prefer to avoid: life expectancy. The American Cancer Society and some medical groups use a life expectancy of 10 years, rather than age thresholds, as guidelines for determining when older patients can stop screening.
“Prognosis is one of the key factors in decision making,” Dr. Smith said. “Will patients live long enough to feel the benefits? It can be an uncomfortable conversation involving age, health, and mortality.
How should older people find out about cancer screenings? In addition to discussing the pros and cons with their doctor — Medicare requires such a visit before they will cover a lung cancer screening — patients can go to the US Task Force on Preventive Services website for the latest reviews.
They can also use ePrognosis, an online guide that Dr. Schonberg, Dr. Smith and their UCSF colleagues 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 that help determine their likely life expectancy, as well as several decision aids.
Of course, patients can also check cancer center websites, but keep an eye out for what may be missing.