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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The Iron Lady, a Film About an Aging Woman

image, "the Iron Lady"

Over the weekend I saw the Iron Lady, a movie about Margaret Thatcher, the former Prime Minister of England.  I expected a top-notch, accented and nuanced performance by Meryl Streep, and got that.

The film surprised me in several respects. It’s really about aging, and how a fiercely independent woman withers. The camera takes you within her elderly, blurry, husband-conjuring mind. She’s forgetful and rambling, but maintains an interest in current events, and ideas. She looks back on events in her life with pride and, seemingly, some regrets.

Well done, worth seeing!


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Notes on Wendell Potter, and Why Companies Support the Individual Mandate

The current debate about the individual mandate reminded me to post this –

About a year ago, I had the opportunity to hear Wendell Potter, author of Deadly Spin – an insider’s sharp critique of the insurance industry, speak at a meeting of the New York Metropolitan Chapter of Physicians for a National Health Program. Despite the cold, dark winter night and midtown dreariness of the meeting location, the large lecture room was packed. I arrived well before Potter’s presentation but couldn’t get a copy of his book; they’d sold out.

The meeting was instructive: I got a sense of Potter’s personal story (he’s from Tennessee, and lived for a while in Appalachia), his previous career (he worked as a journalist, turned to marketing, eventually led PR for Cigna) and his perspective on how people in the health care industry use language to frame the debate on health care reform. Since 2009, when he left his position at Cigna, he writes and speaks critically about the insurance industry.

Potter made several points that clarified my understanding of the insurance companies’ support of the Patient Protection and Affordable Care Act, and why many business-minded sorts are adamant about the individual mandate component in the law.

Insurance companies can’t make a profit without the individual mandate unless they deny coverage to people with pre-existing conditions, he explained. ”Think about it,” he said. “If young and healthy people aren’t going to buy insurance, and insurance companies can’t refuse to cover those with pre-existing conditions, the companies would be responsible only for providing health care to people who choose insurance, including everyone who is sick.”

“Most Republicans who say they favor repeal are disingenuous in that,” he said. “They’re using a smoke screen tactic to persuade the public that they’re against the legislation, but really they support it,” he told. “The insurance companies need it to stay in business,” he added.

The new legislation will also serve most large providers of health care services. That’s because without reform,  more and more Americans will go without any insurance. “If you keep shifting the costs of health care to consumers, they won’t buy it,” he said. And without insurance, most people can’t afford all but the most essential medical services – if those.

So the individual mandate assures that the insurance industry can remain profitable. And it serves the health care industry by maximizing the number of healthy people who will participate in health care spending.

In other words (ES): The health care industry needs health care to be affordable to many “consumers.”

All for now –

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NEJM Reports on 2 New Drugs for Hepatitis C

Last week’s NEJM delivered an intriguing, imperfect article on a new approach to treating hepatitis C (HCV). The paper’s careful title, Preliminary Study of Two Antiviral Agents for Hepatitis C Genotype 1, seems right. The analysis, with 17 authors listed, traces the response of 21 people with hepatitis C (HCV) who got two new anti-viral agents, with or without older drugs, in a clinical trial sponsored by Bristol-Meyers Squibb.

The 21 study participants all had chronic infection by HCV genotype 1, a strain that’s common in North America and relatively resistant to standard treatment. All subjects were between 18 and 70 years old, with a measurable level of HCV RNA in the blood, no evidence of cirrhosis, and no response to prior HCV treatment (according to criteria detailed in the paper). In the trial, 11 patients received a combination regimen of daclatasvir (60 mg once daily, by mouth) and asunaprevir (600 mg, twice daily by mouth) alone; the other 10 patients took the experimental drugs along with 2 older meds for HCV – Peginterferon (Pegasys, an injectible drug by Roche) and Ribavirin (Copegus, a pill, by Roche).

The main finding is that the 10 patients assigned to take 4 drugs all did strikingly well in terms of reducing detectable HCV in their blood over the course of 24 weeks. There was a dramatic response, also, in 4 of the 11 patients assigned to the new drugs only. An accompanying editorial highlighted the work as a Watershed Moment in the Treatment of Hepatitis C. The medical significance is that they’ve demonstrated proof of principle: by “hitting” a resistant HCV strain with multiple anti-viral drugs simultaneously, they could reduce it to undetectable levels.

The first question you have to ask about this report is why the NEJM – the most selective of medical journals – would publish findings of an exploratory analysis of two new pills paired with two older drugs for HCV. The best answer, probably, is that the virus infects some 4 million people in the U.S. and approximately 180 million people worldwide, according to the study authors. HCV can cause liver damage, cirrhosis, liver cancer (which is usually fatal) and, occasionally blood disorders.

The new drugs derive from some interesting science. This, maybe, also is a factor in why the article was published in the NEJMDaclatasvir (BMS-790052) blocks a viral protein, NS5A, that’s essential for HCV replication. The second new drug, asunaprevir (BMS-650032) inhibits a viral protease, NS3.

I have several concerns about this report. One is that the researchers screened 56 patients for possible registration but enrolled only 21 on the trial; according to a supplementary Figure 1, 35 potential subjects (over half) didn’t meet criteria for eligibility. This disparity makes any once-researcher wonder about bias in selecting patients for enrollment. If you’re a pharmaceutical company and want to show a new drug or combo is safe, you’re going to pick patients for a trial who are least likely to experience or display significant toxicity.

Toxicity seems like it could be problematic. Diarrhea, fatigue and headaches were common among the study subjects. Worrisome is that 6 patients (of 21, that would be 28.5% of those on the trial) had liver problems manifest by at least one enzyme (the ALT) rising over 3 times the normal limit.

Further complicating the picture is there’s no indication of how these new drugs mesh with the two drugs approved for HCV in 2011: Vic­trelis (boceprevir) and Incivek (telaprevir).

Given all these limitations, you might wonder about BMS’s influence at the Journal or, more likely, the manuscript’s peer reviewers. The 17 study authors, and the editorialist, separately, disclose a host of industry ties.

What I’m thinking, as much as I’m critical of this research work, is that this is probably the way of the future – smaller, pharma-funded studies of targeted new drugs in complicated combinations. Many will be authored by academics with ties to industry, if not put forth directly by company-employed researchers. These quick-and-promising studies in select patient groups will be routine. And while advocates push for rapid publication of new clinical research in patients with resistant, disabling diseases, it’ll be hard for physicians and patients to interpret these kinds of data.

So these particular findings may turn out to be true and life-saving, or not. The bigger concern is this: It would be helpful if the journals would take a really tough stance on full disclosure of authors and editors ties to industry. As Merrill Goozner has emphasized, the Physician Payment Sunshine Act – a small component of the 2010 HCR legislation – has important implications for academic medicine and reporting of clinical research studies.

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What is the Disease Control Rate in Oncology?

Last week I came upon a new term in the cancer literature: the Disease Control Rate. The DCR refers to the total proportion of patients who demonstrate a response to treatment.

In oncology terms: The DCR is the sum of complete responses (CR) + partial responses (PR) + stable disease (SD).

Another way of explaining it: Some people with cancer have measurable, growing tumors. For example, a man might have a sarcoma with multiple metastases in the lung that are evidently progressing. If the patient starts a new treatment and the lung mets don’t shrink but stop getting bigger, that might be considered a stabilizing effect from the therapy, and his response would be included in the DCR.

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The ‘Journal’ Asks, Should Patients Have Identification Numbers?

Today’s Wall Street Journal includes a special Big Issues health care section. A post on their blog caught my attention: Should Patient Have Electronic Identification Numbers?

The idea is that people who use health care would each be assigned a universal patient identifier, or UPI. This unique number would link to a person’s health records. In principle it would facilitate transfer of a patient’s medical history between doctors, hospitals and, likely, insurance companies. There are arguments pro – mainly having to do with efficiency and patient safety; and against – mainly having to do with privacy.

My issue is that it reminds me of Auschwitz. But apart from that particular association, labeling people with numbers seems dehumanizing – what’s already a big negative in modern health care. I/we need to realize that already we have numbers. Most people have social security numbers. I have several hospital ID numbers and insurance company numbers.

As for privacy, that’s history, or an illusion. If someone wants to know something about almost any person here in the U.S, they can find it. We inhabit a grid.

The debate reminds me of when I was an oncology fellow, and I treated a woman from Central America who had breast cancer. After she underwent a biopsy at our hospital, I reviewed the slides with the pathologist and wrote orders and injected her with chemotherapy. For 15 years or so I followed her in the clinic, and at some point, maybe 5 years after her diagnosis, she told me that her name was not what I’d thought or what her chart said it was. She’d used a cousin’s name and insurance card to get the care she needed.

More recently, I was with a relative who had an MRI. Upon registering at the radiology facility, he had to show a state-issued picture ID besides his insurance card. The issue was clear: with some 50 million or so Americans uninsured, and others without the ready means to cover co-pays, some people are assuming other patients’ identities to get the care they want or need.

The costs to insurers and hospitals of patient identity fraud – what in some instances I might liken to a hungry person stealing a loaf of bread – may underlie this topic’s appearance in the WSJ.

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Regorafenib, an Experimental Pill Tested in Colon and Rectal Cancer Patients, on Conference Agenda

Tomorrow the American Society of Clinical Oncology* will host its 9th annual GI Cancers Symposium. Bloomberg and the LA Times have already reported findings of a paper, still in abstract form, to be presented on Saturday.

The drug of interest is regorafenib, a pill that loosely inhibits quite a few kinases – enzymes critical in cell signals that control growth of normal cells, tumors and blood vessels. The experimental med, manufactured by Bayer, is also known as BAY 73-4506. The new data emerge from an international, randomized Phase III trial that goes by a loaded acronym: CORRECT.

The study included 760 patients with advanced colon or rectal cancer whose tumor progressed after receiving standard treatments. Participants received either the study drug or BSC (best supportive care) and a placebo. According to the paper, BSC includes antibiotics, pain meds, radiation for bone mets, steroids and some other treatments. The median survival in patients who received the Regorafenib was 6.4 months, compared with 5.0 months in patients who got the placebo. This difference, of 1.4 months in the median, was statistically significant. The “disease control rate” – a term that warrants separate explanation – was 44% in the regorafenib group c/w 15% in the placebo group.

The most frequent high-grade toxicities reported so far include a skin reaction affecting patients’ hands and feet, fatigue, diarrhea, elevated bilirubin in the blood, and high blood pressure. (Question to ask the oncologist who’s presenting these data at the meeting – was the elevated bilirubin from liver damage or hemolysis? With all the $millions spent on this trial, surely someone’s followed up on that detail.)

The language of the report and investigators’ comments are reminiscent of some regarding Avastin for advanced breast cancer. According to a media release: “…a subset of patients in the trial have responded particularly well to regorafenib, continuing to have stable disease for a relatively long time; research is ongoing to find ways to identify these individuals.” There are no biomarkers known to check for Regorafenib responsiveness.

What’s odd is that, according to the abstract, # LBA385, all patients entered the study between May, 2010 and March, 2011. This means some subjects were evaluated for less than a year, and the longest observation period for any patient on the trial is 20 months. Seems early to draw meaningful conclusions about the long-term toxicity and possible benefits of a cancer drug, especially for tumor types, like colorectal cancer, that don’t generally grow fast (c/w a condition like acute leukemia).

The list of investigators’ disclosures regarding ties to industry is too long to post here. You can find them at the tail end of the release. The FDA has assigned Fast Track status to this drug, according to Bayer.

*I am an ASCO member.


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The Emperor of All Maladies: A Narrative of Cancer History and Ideas

This week I finished reading the Emperor of All Maladies, the 2010 “biography” of cancer by Dr. Siddhartha Mukherjee. The author, a medical oncologist and researcher now at Columbia University, provides a detailed account of malignancies – and how physicians and scientists have understood and approached a myriad of tumors – through history.

The encyclopedic, Pulitzer Prize-winning book is rich with details. In the first half, Mukherjee focuses on clinical aspects of malignancy. He works both ancient and modern stories into the narrative; the reader learns of Atossa, the Persian queen of the 6th Century BCE who covered her breast disease, and Thomas Hodgkin, who in the 19th Century dissected cadavers and noted a “peculiar” pattern of glandular swelling in some young men, and Einar Gustafson, aka Jimmy, who was among the first children cured of leukemia in the 1950s.

The second half is a tour-de force on cancer biology; the author winds distinct threads of cancer science. He moves from century-old observations of cells with abnormal chromatin, through viral theories and hard-to-prove carcinogens, to the brave new world of oncogenes, targeted therapies, and current cancer genomics. He narrates the rift between clinical oncologists who, primarily, treat patients empirically and think less about science, and cancer researchers, who generally attend separate conferences and concern themselves with mechanisms of tumor growth and theoretical ways of blocking them. He relates a gradual, albeit slow, coming together of those two fields – of clinical and molecular oncology.

Mukherjee leaves the reader with a sense of cancer as a vast, infinitely diverse group of diseases that can mutate and adapt while a person receives treatment. The oncologist’s new goal, he suggests, is not so much to eradicate the disease as to learn more about its nature and course, to monitor each patient’s tumor and adjust medications as the cancer – or burden, as the term implies – shifts and mutates within the person who carries it along, within, for years and even decades.

It takes a long time to understand the workings of cancer cells; this book offers insights for oncologists and patients alike.


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Breast Cancer Stats: Notes from the 2012 ACS Report, and a Key Question

Earlier this month, the ACS released its annual report on Cancer Facts and Figures. The document, based largely on analyses of SEER data from the NCI, supports that approximately 229,000 adults in the U.S. will receive a diagnosis of invasive breast cancer (BC) this year. The disease affects just over 2,000 men annually; 99% of cases arise in women. Non-invasive, aka in situ or Stage 0 BC, including DCIS, will be found in approximately 63,000 individuals.

The slightly encouraging news is that BC mortality continues to decline. This year, the number of expected deaths from BC is just under 40,000. From the ACS document: “Steady declines in breast cancer mortality among women since 1990 have been attributed to a combination of early detection and improvements in treatment.”

Survival data, from the report:

For all women diagnosed with BC, the 5-year relative survival rate has risen from 63% in the 1960s to 90% today. At 10 years, for women of all stages combined, the relative survival is 82% and at 15 years, 77%. Traditional staging still matters: For women with localized BC (that has not spread to glands or elsewhere outside of the breast), the 5-year relative survival at 5 years is 99%. For women with lymph node involvement, 5-year relative survival is 84%.

For those with metastatic disease, 5-year relative survival is 23%. The report cautions: these “stats don’t reflect recent advances in detection and treatment. For example, 15-year relative survival is based on patients diagnosed as early as 1990.”

Since 1990, we’ve seen testing and widespread use of (no longer) new drugs like Herceptin, taxane-type chemotherapies, aromatase inhibitors and other meds in women with MBC. In addition, it’s possible that better palliative care and supportive strategies, along with more effective treatments for infectious and other complications, may have extended survival.

What we’ve got to ask, and about which data are remarkably elusive, is this: What is the median survival for women with metastatic BC (MBC) in 2012?

Your author has spoken with several leading, national authorities on the subject, and no one has provided a clear answer. The reason for this informational hole is that SEER data includes the incidence of new cases at each stage, and mortality from the disease, but does not include numbers on stage conversion – when a woman who had early-stage disease relapses with Stage IV (MBC). There’s astonishingly little current data about on how long women live, on average, after relapsing.

20 years ago, oncology fellows learned that the median survival of women with MBC was around 3 years. Now, that is pretty much still what doctors tell patients, but there’s a sense that the picture is no longer so bleak. Much of what we know about survival of women with MBC comes from clinical trials of patients with particular subtypes (e.g. Her2+ or negative disease). That information, on subtypes and responsiveness to particular drugs, is crucial. But we also need to know the big picture, i.e. exactly – give or take a few thousand women – how many are alive now with MBC?

This information might inform research funding, planning of medical and social services, besides understanding the course of the illness and extensiveness of this problem. And if survival has indeed improved, that measurement, straightforward as it should be, might offer hope to those living with the disease, today.

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Weight Loss Strategies – What Should Doctors Say to Patients?

Yesterday’s Times offered two distinct perspectives on weight loss. One, a detailed feature on gastric surgery by Anemona Hartocollis, details the plight of a young obese woman who opts for Lap-band surgery. In this procedure, surgeons wrap a constricting band of silicone around the stomach so that patients will feel full upon eating less food than they might otherwise. Allergan, the company that manufactures the device, admits to these complications on its website.

The other, a discussion of resolutions and will-power by John Tierney, considers strategies for sticking to diets, exercise regimens and other good intentions for the new year. Within this piece lies a distracting story of an obese (375 pound) hedge fund manager whose gastric band failed to keep his appetite in check. When he landed a project in Las Vegas and feared regaining weight, he aimed high – to lose 100 pounds, outfitted his hotel suite with a gym, and hired a personal trainer to stay nearby and keep him on track in terms of meals and exercise. This costly “outsourcing” of will-power is, obviously, not an option for most people.

Tierney does offer some reasonable suggestions – like setting realistic goals, weighing yourself daily, Tweeting your weight, logging into a weight-loss website, not freaking out if you blow your diet one day, etc.

Both articles are well-worth reading.

But here’s the thing – how do doctors fit into this picture? In the last few years that I was practicing hematology, I saw a few patients who had B12 deficiency after gastric bypass surgery. These patients turned out to have multiple problems after their stomachs were cut so they’d eat less food. For some it was helpful; I saw individuals who lost over 150 pounds. Still, the surgery was huge and risky. I can’t fathom having recommended it to a patient whom I cared for, unless perhaps I’d personally witnessed her struggling to lose weight for over, say, 8-10 years.

Because most people, if inspired or starved, can lose weight. This may sound cruel, but what if the doctors recommending the procedure don’t have sufficient confidence in their patients?

The Lap-band is sold as a safer alternative, but upon reading the story (an anecdote, but telling), you have to wonder what are patients’ expectations of the procedure, and how well do they understand the likely risks and benefits. Who are the doctors who tell them about the procedures, and what are their ties with industry (besides the obvious link of surgeons who do the surgery and recommend it).

Like patients with cancer, patients with obesity may feel desperate. But unlike cancer, obesity is almost always a function of choices we make, and for which I think we have to hold people responsible.

Doctors, maybe, should expect more of their patients. “Yes, you can lose 30 pounds over the next 2 years,” one might say. And they might talk about strategies, Tierney-style or otherwise, based on the patient’s preferences and personality. “Come into my office once each month for a weigh-in” might be very effective in persuading patients to shed pounds. A technician could do the monthly measurement in the office or medical home, and the doctor or nurse might follow-up with an encouraging email. Imagine that!

So why don’t more general practitioners, including pediatricians, offer this sort of weight-loss approach? Is it too simple a strategy that doctors don’t find it interesting? Or not sufficiently profitable for the office or medical center?

No answers, just thoughts upon reading, for today –

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