Changing the Definitions of Disease Can Harm Patients

Researchers write that medical diagnostic categories for disease are often broadened over time in ways that may be harmful to patients.

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The story of medical advancement suggests that as we learn more about the true nature of diseases, we can make more accurate diagnoses. According to researchers writing in the top-tier medical journal JAMA, however, this story may be a myth. They suggest that the expansion of diagnostic categories and the creation of new disease labels is a subjective process that is just as likely to harm patients as it is to help.

“Even with common diseases (such as diabetes, depression, and anemia), their definitions have changed considerably over time, with significant, but often unrecognized harmful, potential consequences for patients.”

Photo credit: Marco Verch, CC BY 2.0

The researchers, led by Jenny Doust at the University of Queensland, Australia, explore different ways that diagnostic categories can change. In each of these changes, doctors begin to identify people who may not benefit from treatment—people with no symptoms who show signs that have also been associated with the “disease,” and people with mild or earlier forms of the “disease” who may not ever experience a worsening of the problem.

  • Professional societies and guidelines decide to expand disease criteria.
  • More “sensitive” tests to pick up people who have only mild symptoms.
  • Expansion of screening—people who appear healthy are examined for the markers of a theorized hidden disorder.
  • Clinicians may be incentivized to make a diagnosis when the criteria are subjective.

This last method of diagnostic expansion is especially seen with psychiatric diagnoses. These diagnoses include subjective criteria that depend on differentiating someone’s behavior from what is “normal” to the clinician. According to Doust and the other authors, the immense increase in children being diagnosed with autism and ADHD may be due to clinicians being incentivized to diagnose subjective cases as “having” the disorder so that the children can receive special services.

But diagnostic expansion isn’t unique to the psychiatric field. Doust and the other researchers also discuss hypertension. Initially, the diagnosis required a pretty strict threshold of high blood pressure, and few people met the criteria. However, the diagnosis was recently broadened. Overnight, almost half (46%) of US adults could be diagnosed with hypertension.

Of course, this could be helpful if increased diagnosis led to better outcomes. However, according to the researchers, diagnostic expansion is far more likely to lead to harm. The researchers go on to explain how increased diagnosis can harm people.

“Harms from changes to disease classifications can be related to the medical complications and adverse effects of interventions, the psychological harms and anxiety caused by the disease label, and financial harms such as costs related to additional testing and treatments. There are also significant implications for health systems. The diversion of health care resources and attention to treat those with mild disease is threatening the viability of health care systems worldwide.”

In sum, overdiagnosis and overmedication lead to physical, mental, and financial harm for individuals and society.

If treatment were effective for people with mild hypertension—helping to reduce the risk of heart attack, for instance—then it might be good that we expanded the diagnosis. However, according to the researchers, studies have found that treating hypertension only helps if someone is also at risk for cardiovascular disease. About 25% of people with hypertension experience no benefit from treating it, but are exposed to the side effects of medication and overuse of medical services.

The researchers say this is not unique to hypertension—they write that expanding the diagnostic categories to pick up people with early or mild forms of the “disease” is almost always harmful, rather than helpful.

“Patients with earlier and milder disease are less likely to benefit in absolute terms, but are just as likely to experience harm from medical interventions as those with more severe disease, making it more likely overall that a patient will experience harm.”

Astonishingly, in a review of guidelines and expert panels that proposed changing diagnostic categories, researchers found that none of them at all considered potential harms when deciding to expand the definition. In that same study, researchers found that financial conflicts of interest with the pharmaceutical industry were prevalent.

Out of 14 panels, 12 were chaired by someone receiving money from the industry. On average, 75% of the “experts” on the panels were paid by the pharmaceutical industry. According to that study, the industry has a primary interest in expanding diagnostic categories: the more people who “have” a disease, the more people there are to buy medications.

According to Doust and the other researchers, “The current methods, which often rely on opinion rather than evidence and may be influenced by academic and financial conflicts of interest, are not sustainable.”

They write that potential new diagnostic categories need to be researched thoroughly, and the harms considered before changes are made. Additionally, professional societies need to consider the ways they are incentivizing clinicians to give out the diagnosis in subjective situations.

 

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Doust, J. A., Bell, K. J. L., & Glasziou, P. P. (2020). Potential consequences of changing disease classifications. JAMA. Published online February 7, 2020. DOI:10.1001/jama.2019.22373 (Link)

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13 COMMENTS

  1. Excellent article. I’ve often wondered if at least part of the reason Americans don’t live as long as people in other developed countries is because of the number of drugs they take. Physicians are a major cause of this travesty. They prescribe antidepressants for everything from transient depression to anxiety to trouble sleeping. Statins are another category of drug that are indiscriminately prescribed (do physicians tell their patents that the chance of a statin helping a person without heart disease is 2% at best). The assault on children who are unnecessarily prescribed ADHD drugs and then prescribed other drugs to counter the bad effects of the ADHD drugs is unconscionable. Even worse are the number of children who are prescribed antipsychotics for reasons that include behavior control. Among those complicit in this perversion are medical societies that accept pharmaceutical funding. So many people are making money from our drug obsessed culture that I don’t expect to see any major changes in the near future.

  2. “[P]rofessional societies need to consider the ways they are incentivizing clinicians to give out the diagnosis in subjective situations.” This would include all the DSM disorders, since all the DSM diagnoses are based upon subjective symptom presentation, not medical tests.

    But I’m quite certain leaving it up to the professional societies, which financially benefit from misdiagnosing millions of innocent people, is unwise, given the professional societies have financial conflicts of interest.

    • In what other situations can these diagnoses be given out? They are ALWAYS given on in a subjective situation, because they are all utterly subjective by their very nature. A lay person is just as qualified as a psychiatrist to give a subjective opinion on someone’s “mental health condition,” which is why so many feel like the can do so.

      • The truth is subjective diagnoses should never be given out, thus the DSM disorders should all be gotten rid of. And only diagnoses which can be medically proven, according to medical tests, should be given credibility by the medical community.

        The problem for the mainstream medical community, however, is this is not what is profitable for them. So they can’t stop defaming children with the make believe DSM disorders, because “it’s too profitable,” according to a pediatrician. To whom I pointed out the systemic misdiagnoses and crimes of the DSM “bible” believers.

  4. Good article Peter.
    The research however goes unheard, the decline in rational approach just continues despite evidence which would be a phenomena on it’s own, except to come to a conclusion that man is either nuts or driven purely by profit, although I lean towards the idea that some people honestly believe that what they think, what they theorize, needs to be acted on.
    So it leads me to believe that most people who claim to be scientists, or researchers into the objective or subjective, rather lack objectivity.

    We are doing poorly as a society, very poorly. As sapiens, we have no one above ourselves to report to and thus are vulnerable to our assessments of our states.

    Even such a thing as ADHD etc, watching a child’s development for signs of diverging from a norm, virtually has science disputing it’s own claims. The claims that a brain has plasticity. Meaning, it can change. Science also tells us that a brain continues to ‘develop’ until in the 20’s.
    For science to medicate, or interfere with “symptoms”, in a ,medical form, interferes with the brain of a child, and because of the laughable bits of ‘science’, knowledge we have, we have absolutely no clue what part of plasticity/development we shut off.
    It is the most crude of experiments. All based on subjective analyses, EVEN IF, ‘proven’ on a scan, we still need to identify what is “normal”.
    Psychiatry is usually in agreement, at least verbally, that ‘normal’, becomes difficult to define, yet in practice, they have a definition that is so narrow, it becomes impossible to squeeze through.

    Science, that illusive science is hampered by itself. The only thing that could possibly lead to going in the right direction is listening to consumers. THAT is where the true feedback lies, on which to build on.
    I myself would be a great subject to study, because of age and experience, yet how can I try to communicate with a neurologist or psychiatrist if their minds are not capable of curiosity, if their minds are stuck and tied to their ideas?
    That inability of them to be suggested to, their minds not malleable, leads to a completely unrealistic approach, and advance into wrong directions.
    It is interesting that they think of consumers as “lay people”. One is no longer a lay person if they experienced neurological differences or hypertension.

    Of interest is how they identify diseases earlier and earlier, or look for ‘markers’.
    YET, if patients go to them with questions about possible earlier disease, they are then classified as hypocondriacs.
    I do think the media is not helpful either. Every researcher wants to be in the limelight, to get their latest thought heard, just in case it ends up having been part of some eureka discovery.
    Yet at the same time, the public needs to know what they are up to…..despite our knowledge of what they are up to, not making much impact.
    Of course, reporting is firstly not always honest, nor are the research papers honest.

    We could probably all agree that there were simpler times. The increase in what we think of as scientific thought has absolutely not led to improvements, and everyone keeps believing we can do better.
    I would want to believe we could do better, but NEVER without involving the subjects, the humans and their experiences, their thoughts and views.
    The consumers are no longer “laypeople”.

  5. Okay, this guy should have known better and just gotten his PHD to make the absurd more authentic and not be involved in lawsuits.https://www.bing.com/videos/search?q=keith raniere&&view=detail&mid=CE5F639FA973BA3F234DCE5F639FA973BA3F234D&&FORM=VRDGAR&ru=/videos/search?q=keith%20raniere&qs=n&form=QBVR&sp=-1&pq=keith%20raniere&sc=8-13&sk=&cvid=044522002C8948D0BB59A01860D4688D
    It is the PHD that allows you to literally say anything without repercussion, but it does take group planning and adherence, it takes discussion about what norms consist of.
    You can then medicate or therapy these abnorms. This guy was doing all of that without licence.
    One needs a “licence to kill”. I think there is a movie, perhaps it should be a book about our absurd science

  7. So instead of just ‘schizophrenia’, they will diagnosis people with ‘mild’, ‘moderate’ and ‘severe’ ‘schizophrenia’?

    So now I can talk to people and say “oh, I don’t have unsolved childhood traumas that caused me a lot of suffering in my adulthood and I’m not willing to face. What I have is moderate schizophrenia, guys. Look at how poor I am!”