9-part series on over-diagnosis (short reads from a health care journalist)

Over-diagnosis happens when people are diagnosed with diseases or conditions that won’t actually harm them. 

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From the 3 October 2012 blog article by Gary Schwitzer at HealthNewsReview.org

Ray Moynihan, a terrific health care journalist who is now pursuing his PhD on overdiagnosis and working as a Senior Research Fellow at Bond University in Australia, kicks off the first of a nine-part series, “Over-diagnosis Epidemic” on TheConversation.edu.au website.

The first part is an introduction, “Preventing over-diagnosis:  how to stop harming the healthy.”

“To put it simply, over-diagnosis happens when people are diagnosed with diseases or conditions that won’t actually harm them. It happens because some screening programs can detect “cancers” that will never kill, because sophisticated diagnostic technologies pick up “abnormalities” that will remain benign, and because we are routinely widening the definitions of disease to include people with milder symptoms, and those at very low risk.”

Other colleagues author the subsequent parts in the series:

Part two: Over-diagnosis and breast cancer screening: a case study

“…But what we found was that the greatest relative reduction in breast cancer mortality (44%) occurred in the youngest age group. These women (aged 40 to 49 years) are not invited for screening. In contrast, women aged 60 to 69 years, who areinvited to screen, had the smallest relative reduction in mortality (19%).

Given that three times as many women aged 60 to 69 (about 60%) participated in Breastscreen (compared to 20% of women aged 40 to 49 years), our finding is not consistent with screening having a major impact on the reduction in breast cancer mortality since 1991.”…

Part three: The perils of pre-diseases: forgetfulness, mild cognitive impairment and pre-dementia

“…Most studies show that only one in ten cases of mild cognitive impairment progress to dementia each year, and many improve. One study that followed outcomes for ten years concluded – “The majority of subjects with MCI do not progress to dementia at the long term.”…

Part four: How genetic testing is swelling the ranks of the ‘worried well’

“..A major concern with such tests is that they’re the beginning of a path toward over-diagnosis, where the potential to develop a disease or being at risk for the disease is strong enough to constitute a label of sickness.

Over-diagnosing includes, but is not limited to, widening disease definitions, early detections of abnormalities that may or may not cause symptoms or death and the use of increasingly sensitive technologies that detect “abnormalities,” the causes and consequences of which are unknown at this time…”

Part five: PSA screening and prostate cancer over-diagnosis

Part six: Over-diagnosis: the view from inside primary care

“..The most common reason general practitioners are sued is because of missed diagnoses. Missed diagnoses also invoke a strong sense of professional failure. So how can general practitioners manage in this sea of uncertainty?

One way is to perform more tests. This is also popular with patients, who perceive that tests ensure nothing serious is missed. What is not well understood by patients (and sometimes also by clinicians) is the potential harm from testing.

The most obvious harm is the cost and resources required; we would quickly overwhelm the health system if we performed an MRI on every patient with back pain. A strong system of primary care results in a health-care system that’s both more efficient and less costly because primary-care physicians are skilled at filtering those with severe disease needing further tests, from those with self-limiting illnesses…

…

The greatest harm from the increased use of testing, however, is not costs, resources or false positives. Rather, it’s the problem of over-diagnosis.

Clinicians and patients both believe that finding a disease earlier in its process means it will be more successfully treated. But there’s increasing evidence that finding disease early or at a milder stage has paradoxical harmful effects, even reducing survival and quality of life.

Wider availability of more sophisticated tests results in “incidentalomas”, incidental findings that would not have otherwise been diagnosed. The detection of thyroid cancers, for instance, has more than doubled in the past 30 years. But most of these diagnoses are incidental findings from imaging…”

Part seven: Moving the diagnostic goalposts: medicalising ADHD

Part eight: The ethics of over-diagnosis: risk and responsibility in medicine

Part nine: Ending over-diagnosis: how to help without harming

 

 

Related articles

• #Preventing #over-diagnosis #good #healthy (leggotunglei808.wordpress.com)
• What good is a diagnosis? (wisecounsel.wordpress.com)
• Biopsies may misdiagnose eosinophilic esophagitis (yvonnebergeron.wordpress.com)

 

What Doctors Don’t Know & Journalists Don’t Convey About Screening May Harm Patients

From the 8 March 2012 blog item by Gary Schwitzerat at HeatlhNewsReview.org

A paper in the Annals of Internal Medicine this week asked (and partially answered): “Do Physicians Understand Cancer Screening Statistics?”

The authors – familiar names like Woloshin, Schwartz, Gigerenzer – are from the Harding Center for Risk Literacy at the Max Planck Institute for Human Development in Berlin and from the Dartmouth Institute for Health Policy and Clinical Practice.

It’s a shame this paper isn’t freely, publicly available to all readers because it may help explain some of the foundation of the dilemma we face in this country about miscommunication about the tradeoffs involved in screening tests.

Reuters Health reported:

“…three-quarters of the more than 400 doctors surveyed believed better survival rates prove screening is a lifesaver although that’s not the case, researchers say.

And nearly half thought early detection translates into saving lives — another common misperception.

“This is really unfortunate because one of the things we always say is, ‘Discuss it with your doctor,’” said Dr. Otis Brawley, chief medical officer of the American Cancer Society. “This is evidence that your doctor doesn’t know.”…

…

Dr. Steven Woloshin, of Dartmouth Medical School in Hanover, New Hampshire, who worked on the new survey…told Reuters Health that death rates gleaned from clinical trials are the only reliable way to judge if a screening test is effective. But organizations that promote screening, such as the breast cancer charity Susan G. Komen for the Cure, tend to prefer survival rates, which sound more impressive…

…

 Dr. Virginia Moyer of Baylor, also chair of the US Preventive Services Task Force, wrote an accompanying editorial, “What We Don’t Know Can Hurt Our Patients: Physician Innumeracy and Overuse of Screening Tests.“  In it, she mentioned our work:

“Excellent work on how to effectively communicate statistical data to both patients and physicians has been done, but more is needed. Work of this sort is being supported by the Agency for Healthcare Research and Quality and such groups as the Foundation for Informed Medical Decision Making. To temper the unbridled enthusiasm of patients for screening tests, and especially for cancer screening, we need to reach beyond medicine to the public, which of course gets a substantial amount of medical information from the media. Educational efforts should focus not just on medical students and physicians but also on journalists. Several medical journals have taken the lead in making it easier for journalists to get the statistics right and to recognize the limitations of the studies they report. Watchdog groups, such as HealthNewsReview.org, help to monitor press reports and should be encouraged to add interpretation of screening statistics to the criteria they use to assess health news stories.”…

 

Related articles

• Most U.S. Doctors Baffled by Cancer Screening Stats (nlm.nih.gov)
• Many Docs Order Unneeded Lung Cancer Screening Tests: Survey (news.health.com)
• Many Primary-Care Docs Don’t Understand Cancer-Screening Stats: Study (blogs.wsj.com)
• Ovarian Cancer Screening Popular Despite Guidelines (nlm.nih.gov)
• New Guidance For Colorectal Cancer Screening (medicalnewstoday.com)
• When Are You Too Old For Routine Screening Tests? (aarp.org)

Most consumers want predictive tests to learn if a disease is in their future

Most consumers want predictive tests to learn if a disease is in their future

Largest study of its kind demonstrates the ‘value of knowing’ may be underrecognized by conventional cost-effectiveness analyses

From a January 7, 2011 Eureka news alert

BOSTON, Mass.––Consumers may place a high value on information to predict their future health, and may be willing to pay out of pocket to get it. In a national survey conducted by researchers at Tufts Medical Center, roughly 76% of people indicated that they would take a hypothetical predictive test to find out if they will later develop Alzheimer’s disease, breast or prostate cancer, or arthritis. On average, respondents were willing to pay $300 to $600, depending on the specific disease and the accuracy of the test.

Published online in the journal Health Economics, the study examined individuals’ willingness to take and pay for hypothetical predictive laboratory tests in which there would be no direct treatment consequences. Overall, researchers found that in most situations, people were willing to pay for this ‘value of knowing’—even if the tests were not perfectly accurate.

Responses to the survey varied according to information provided about the disease risk profile and the accuracy of the hypothetical test. Of the 1463 respondents, willingness to be tested was greatest for prostate cancer (87% of respondents), followed by breast cancer (81%), arthritis (79%), and Alzheimer’s disease (72%). Average willingness to pay varied from roughly $300 for an arthritis test to $600 for a prostate cancer test.

“This study brings us a step closer to understanding people’s preferences and motivations for wanting a diagnostic test, even if it has no bearing on subsequent medical treatment,” says lead author Peter J. Neumann, ScD, director of the Center for the Evaluation of Value and Risk in Health at the Institute for Clinical Research and Health Policy Studies at Tufts Medical Center. “While we have to proceed cautiously in this area, given that tests have costs and risks as well as benefits, our study suggests that many people value information—both for its own sake and because they will adjust lifestyle and behavior choices accordingly.”

The randomized, population-based internet survey presented participants with the option to take a hypothetical predictive blood test for one of the four diseases, understanding that the test would not be covered by insurance. Participants were asked how much they would be willing to pay for a test that could predict their disease. Some respondents were asked about a ‘perfectly accurate’ test, and others about an ‘imperfect’ one. They were also queried about their socioeconomic information, health status, risk attitudes and behaviors, and likely actions after receiving a positive test result.

The advancing field of in vitro diagnostics (IVDs) includes an increasing number of clinical laboratory tests that offer the hope of personalized screening to assess an individual’s risk of developing certain diseases based on genetic markers found in blood or tissue samples.

According to Neumann, the growing use of predictive testing worldwide has resulted in increasing demands for evidence that demonstrates the value of such tests. Health technology assessment groups typically measure the utility of diagnostic tests in terms such as increased accuracy of test results, cost-effectiveness, or improved health outcomes for patients. But assessing the value of predictive testing may also require the use of new or different measures. In the Tufts Medical Center study, the researchers also found:

• Income and disease type impact willingness to pay. The amount of money patients were willing to pay out of pocket for tests increased with income levels, and was significantly higher for breast and prostate cancer and Alzheimer’s disease than for arthritis.
• Gender, age, and education influence test participation. About 24% of individuals sampled elected not to take the predictive test. Generally, older respondents, women, those with a bachelor’s or higher degree, and those with healthier behaviors were less inclined to undergo testing, even if it were free. Among those not wanting the test, major concerns expressed included the cost of the test, living with the knowledge of one’s disease risk, and the lack of preventive measures.
• Test results may alter future behavior. When faced with positive test results, individuals indicated they would change certain aspects of their lives, such as spending more time with loved ones (51%), putting their finances in order (48%), or traveling more (31%).

“By taking into account all implications of these tests— including the risks, costs, potential cost offsets, and the value they have outside of medical outcomes—we can build better policies and make better decisions about coverage and reimbursement, so that we may more accurately reflect patient preferences and appropriate uses of societal resources,” says Neumann.

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The study, “Willingness to Pay for Predictive Diagnostic Information with No Immediate Treatment: A Survey of U.S. Residents,” (Health Economics, published online before print, 28 December 2010: doi: 10.1002/hec.1704) was supported by a grant from the Institute for Health Technology Studies (InHealth). Coauthors of the study are Joshua T. Cohen, James K. Hammitt, Thomas W. Concannon, Hannah R. Auerbach, ChiHui Fang, and David M. Kent.