"#Overdiganosis is in the eye of the beholder" The challenge begins with definition

Stacy Carter headed a great session at the Preventing Overdiagnosis 2014 conference in Oxford, which is where I met her for the first time.

 This BMJ talk Medicine interview expands on that session and on the paper written with Rogers, Heath, Degeling, Doust, and Barratt. They explore the culture (ethical and social aspects) and science behind "overdiagnosis," why it is so hard to define, and limitations of the term.

Listen at the BMJ and read the paper, which I am delighted to report, cites this website!

Source: http://www.bmj.com/content/350/bmj.h869

How can you have an overdiagnosis of cancer? Either it's there, or it's not.

"How can you have an overdiagnosis of #cancer?  Either it's there, or it's not." – @susila55

[click to expand]

Rates of new diagnosis and death for five types of cancer in the US, 1975-2005. Adapted from Welch and Black, in Preventing overdiagnosis: how to stop harming the healthy. BMJ 2012; 344:e3502

In response to tweets about a potential for overdiagnosis in thyroid cancer cases, a twitter user, Susan Burke Mangano (@susila55), asked this question.

There have been many articles lately on overdiagnosis of almost all kinds of cancer. Our twitter discussion was mainly around thyroid cancer (with Dr Gilbert Welch leading in publications eg. Current Thyroid Cancer Trends in the United States).

Whether breast or prostate, thyroid or renal, the conclusions are generally the same: we are diagnosing more and more cancer, but it is not affecting mortality rates.

How? What?

"There is an ongoing epidemic of thyroid cancer in the United States. The epidemiology of the increased incidence, however, suggests that it is not an epidemic of disease but rather an epidemic of diagnosis." – Welch et al.

I'm not going to explain it here myself since it has already been done well in many places, the most straightforward of which is this video/article combo, by the Wall Street Journal.

I highly recommend you take a look.

Read Some Cancer Experts See 'Overdiagnosis,' Question Emphasis on Early Detection in the Wall Street Journal.

 

* As they have just locked this article (you need a WSJ subscription or institutional access eg. university library account), I will include a few pertinent quotes here:

 

While it's clear that early-stage cancers are more treatable than late-stage ones, some leading cancer experts say that zealous screening and advanced diagnostic tools are finding ever-smaller abnormalities in prostate, breast, thyroid and other tissues. Many are being labeled cancer or precancer and treated aggressively, even though they may never have caused harm . . .
"We're not finding enough of the really lethal cancers, and we're finding too many of the slow-moving ones that probably don't need to be found," says Laura Esserman, a breast-cancer surgeon at the University of California, San Francisco. . . .
"Unfortunately, when patients hear the word cancer, most assume they have a disease that will progress, metastasize and cause death," the group wrote in the journal Lancet Oncology in May. "Many physicians think so as well, and act or advise their patients accordingly." . . .
Overdiagnosis--the detection of tumors that aren't likely to cause harm--is now a hot topic in other cancers as well. A growing volume of studies estimate that as many as 30% of invasive breast cancers, 18% of lung cancers and 90% of papillary thyroid cancers may not pose a lethal threat. . . .
"Everyone says they'd be willing to be overtreated if it means not dying--but that's a big fallacy," says Dr. Esserman. "By treating 1,000 people who have low-risk disease, we're not going to save the one person with aggressive disease." . . .
Says Dr. Esserman: "We need to start testing some of these ideas, rather than just fighting over them. People are afraid to do less. We want to figure out how to do less safely."
- Melinda Beck, WSJ

7 Themes from Preventing Overdiagnosis #PODC2014

In September I was lucky enough to attend the Preventing Overdiagnosis conference in Oxford, UK. I learned about new resources and people that I could connect with, changed some of my beliefs, and generated even more questions for myself/the health care system.

In my reflection, 7 major themes emerged:

  1. Nomenclature

    • under-use is as much an issue as over-use
      • like food, we want our medicine neither over- nor under-cooked [David Haslam]
    • how do we define the problem? what terms are being used to describe this/similar issues? [see glossary for some] can we create a common term?
    • causes of overdiagnosis are on a spectrum
      • good intentions -- wishful thinking -- vested interests [Stacy Carter]
         
  2. Cognitive/Labeling Biases = Problematic

    • flawed thinking: doing something better than nothing, "more is better"
      • the more resources exist, the more they are used
    • actions motivated by fear (of death, illness, uncertainty)
    • labeling bias
      • is there any other way we can see patients besides by labeling them with diagnoses? [William House, Andrew Morrice]
      • creating a "WAR ON CANCER" galvanizes people, breeds an ideology and creates fundamentalists
         
  3. It Is about conversations, not certainties

    • mostly grey areas, no blanket rule for everyone; evidence, guidelines, recommendations must be interpreted for each patient
    • pathology is a continuum, never/rarely yes or no
    • "correct" is not always effective

    • use existing skepticism/understanding to inform others

      • eg. people have begun to understand the harms of the overuse of antibiotics; parlay that into other areas
         

  4. Individuals vs. populations

    • for Patient X to not have a stroke, 76 other people have to be on statins
    • it is not possible to know at an individual level if something is overdiagnosis
    • evidence often does not apply to the person sitting in front of you
       
  5. Health Care delivery is flawed

    • changing the way we delivery primary care might be the heart of the solution
    • "consumer"-driven Predictive, Preventive, Personalized, Participatory (P4) medicine is scary & narcissistic [Henrik Vogt]
    • neo-paternalism may have a role
    • industry is scary
      • for-profit medicine is the biggest enemy of "Less is More Medicine"
      • this drives the medicalization of normal life, which makes us sicker!
    • the technology for genetic-based medicine is a long way off from being helpful
       
  6. Screening fails in ways we never imagined

    • patients equate screening with access to care [Laura Batstra]
    • "why is screening exempt from the ethical responsibilities to do no harm?" [Alexander Barratt]
    • preventative medicine has disappointing outcomes [Linn Getz]
       
  7. Evidence is lacking

    • it's not just a lack of quantity or quality
    • do we really need clinical trials to prove the obvious? can't we just do the right, ethical thing? [Dan Mayer]

Did you take away the same points as I did? Something completely different?

I'm already looking forward to the conference next year, in Bethesda, USA.