Cyberchondria Rising – What is the Term’s Meaning and History?

Yesterday the AMA news informed me that cyberchondria is on the rise. So it’s a good moment to consider the term’s meaning and history.

Cyberchondria is an unfounded health concern that develops upon searching the Internet for information about symptoms or a disease. A cyberchondriac is someone who surfs the Web about a medical problem and worries about it unduly.

Through Wikipedia, I located what might be the first reference to cyberchondria in a medical journal: a 2003 article in the Journal of Neurology, Neurosurgery, and Psychiatry. A section on the new diagnosis starts like this: “Although not yet in the Oxford English Dictionary, the word ‘cyberchondria’ has been coined to describe the excessive use of internet health sites to fuel health anxiety.” That academic report links back to a 2001 story in the Independent, “Are you a Cyberchondriac?”

Two Microsoft researchers, Ryen White and Eric Horvitz, authored a “classic” paper: Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search. This academic paper, published in 2009, reviews the history of cyberchondria and results of a survey on Internet searches and anxiety.

Interesting that the term – coined in a newspaper story and evaluated largely by IT experts – has entered the medical lexicon. I wonder how the American Psychiatry Association will handle cyberchondria in the upcoming DSM-5.

 

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Defining a Cluster of Differentiation, or CD

One of the goals of this blog is to introduce readers to some of the language of medicine. As much as jargon is sometimes unnecessary, sometimes the specificity and detail in medical terms aids precision.

So what is a cluster of differentiation, or CD?

In medical practice, the two-letter acronym specifies a molecule, or antigen, usually on a cell’s surface. In 1982, an international group of immunologists got together for the First International Workshop on Human Leukocyte Differentiation Antigens. The initial focus was on leukocyte (white blood cell) molecules. The goal was to agree on definitions of receptors and other complex proteins to which monoclonal antibodies bind, so that scientists could communicate more effectively.

A few examples of CDs about which you might be curious:

CD1 – the first-named CD; this complex glycoprotein is expressed in immature T cells, some B cells and other, specialized immune cells in the skin; there are several variants (CD1a, -b, -c…) encoded by genes on human chromosome 1.

CD4 – a molecule on a mature “helper” T cell surface; T lymphocytes with CD4 diminish in people with untreated HIV disease.

CD20 – a molecule at the surface of immature B lymphocytes that binds Rituxan, an antibody used to treat some forms of lymphoma, leukemia and immune disorders.

 

In this schematic, an antibody recognizes a specific molecule, or cluster of differentiation, at a cell surface.

The CDs were named (i.e. numbered) not necessarily by the order of discovery, but by the order of their being deemed as bona fide CDs by HLA Workshop participants. There’s a pretty good, albeit technical, definition in FEBS Letters, from 2009:

Cluster of differentiation (CD) antigens are defined when a surface molecule found on some members of a standard panel of human cells reacts with at least one novel antibody, and there is good accompanying molecular data.

Perhaps the best way to think about CDs is that they’re unique structures, usually at a cell’s surface, to which specific antibodies bind. By knowing the CDs, and by examining which antibodies bind to cells in a patient’s tumor specimen, pathologists can distinguish among cancer types. Another use is in the clinic, when oncologists give an antibody, like Campath – which binds CD52, the responsiveness might depend on whether the malignant cells bear the CD target.

Still, I haven’t come across an official (such as NIH), open-source and complete database for all the CDs. Most can be found at the Human Cell Differentiation Molecules website, and information gleaned through PubMed using the MeSH browser or a straight literature search.

Wikipedia is disappointing on this topic; the list thins out as the CD numbers go higher, and the external references are few. To my astonishment, I found a related page on Facebook. Neither makes the grade.

Where should patients get information about these kinds of things? Or doctors, for that matter?

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Crowd-Sourcing a Medical Puzzle

The Times ran an intriguing experiment on its Well blog yesterday: a medical problem-solving contest. The challenge, based on the story of a real girl who lives near Philadelphia, drew 1379 posted comments and closed this morning with publication of the answer.

Dr. Lisa Sanders, who moderated the piece, says today that the first submitted correct response came from a California physician; the second came from a Minnesota woman who is not a physician. Evidently she recognized the condition’s manifestations from her experience working with people who have it.

The public contest – and even the concept of using the word “contest” – to solve a real person’s medical condition interests me a lot. This kind of puzzle is, as far as I know, unprecedented apart from the somewhat removed domains of doctors’ journals and on-line platforms intended for physicians, medical school problem-based learning cases, clinical pathological conferences (CPC’s) and fictional TV shows.

In this example, the patient’s diagnosis was known, and treatment successfully implemented, before publication. Surely the Times legal team carefully reviewed those scanned commercial lab reports with the wiped-out patient’s name and address, and likely they got the OK from the patient and her family to run the story as they did. There were sufficient details included that she’s likely identifiable to some people in her community.

The case is instructive at many levels: It’s not just about the girl and her symptoms and her disease, and how doctors think, but about how the population of New York Times readers approached it over the course of 24 hours. A question an editor, if happy with the “results” – i.e. the on-line turnout (clicks, emails, tweets…) and lack of flak – might ask is what sort of case to use next week or next month, and how perhaps to improve on the presentation.

The question I ask as a physician is this: why we don’t have this sort of crowd sourcing for tough, unsolved medical cases? Privacy is an obvious concern as is, perhaps, physicians’ fear of missing something or being wrong. Also, if a diagnosis isn’t already determined, the responsible doctor might end up (and likely would) order more tests and, perhaps, harm the patient by chasing zebras and heeding some well-intentioned but absurd or simply wrong suggestions from a diverse collection of world-wide readers. So there would be a problem of “too many cooks” among other issues.

On the other hand, a single physician dealing with a challenging case would have, potentially, access to the expertise of millions of people, perhaps a few who have genuine insight and have seen a rare situation before. Doctors needn’t think in silos.

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Suggestions to Reduce Errors in Breast Cancer Pathology

A prominent article in yesterday’s New York Times considers some troubling problems regarding inaccuracy in breast cancer diagnosis and pathology. The main point is that some women get needless, disfiguring and toxic treatments after being told they have breast cancer when, it turns out, their condition was benign.

My main take on this situation – which doesn’t just apply to breast cancer – is that, whenever possible, patients should get a second opinion on biopsy results before undergoing major treatment. The costs of a second pathology review is sometimes covered by insurance, but sometimes it’s not; either way, that’s money well-spent, especially if the opinion is rendered by an appropriately-credentialed, expert pathologist who works in a state-of-the-art facility.

From the doctor’s perspective there’s responsibility, too. Surgeons shouldn’t lop off a woman’s breast without knowing that the pathology is real. Well-trained oncologists know they’re supposed to review the pathology, to make sure the diagnosis is true, before giving chemo. The Times story indicates that the Cancer Treatment Centers of America has a specific policy in this regard, that doctors there must review the pathology for patients who are new to their system. This wise policy, common in some hospitals and tumor boards such as where I practiced, makes it less likely that oncologists or other doctors will give inappropriate treatment.

From an administrative standpoint, there could be better regulation to assure quality. Pathologists who are employed, busy evaluating tumor specimens without supervision, should be board-certified and required to be up-to-date in the specialized fields of their practice. And laboratories (as opposed to pathologists who work there) should be closely monitored because pathology errors can arise from faulty stains, use of poor-quality or old reagents, incorrect calibration of a machine, lack of appropriate “controls” for each batch of cases evaluated, etc.

A related story appeared earlier this year, also in the Times, on the variability of pathology reports. That article reported on how different pathology labs provide disparate results on whether a breast tumor has estrogen and progesterone receptors in the malignant cells, and whether the malignant cells express Her2 – the target of Herceptin – or not. The lack of agreement among pathologists renders treatment decisions difficult. The piece focused on a physician who couldn’t decide if she should take Herceptin or not, because she received conflicting reports about her tumor.

Getting the diagnosis right underlies many cancer care problems and undue costs. If I were an insurance company executive, I’d recommend that my firm cover the costs of a second pathology opinion in all cases. It’s far less costly to find out that a “tumor” is not really malignant than to pay for surgery, chemotherapy and radiation that’s not needed.

Better still, I’d insist that biopsy specimens be evaluated by pathologists who are trained in current methods and who work in trust-worthy laboratories.

Such a policy would reduce false positives in cancer diagnosis, and would thereby reduce the toxicity and costs of unwarranted cancer treatments. With better diagnostic facilities, those patients who do have cancer would not be so afraid to undergo the treatments they really need, because they’d be confident that they and their doctors were making decisions based on reliable information.

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