Category: Patients

Disclosure isn’t enough

published date
November 30th, 2006 by

Disclosure isn’t enough

Most cancer patients in clinical trials don’t care if their doctor has financial ties to the trial’s sponsor, according to a study decribed in the Washington Post. The article says the survey

undermines “full disclosure” as a central tenet of clinical research.

The authors think that patients may be too overwhelmed by their disease to think critically about such conflicts. That may be true. However, I’m not surprised that disclsoure doesn’t work. It reminds me of the situation in financial services, where equity analysts with clear conflicts of interest wrote bullish reports on the companies they covered. Those conflicts were often disclosed but it didn’t stop investors from treating the reports as objective. More likely, the investor or patient assumes the analyst or doctor will bend over backwards to ensure objectivity once disclosing the conflict. That’s a bad assumption.

Another reason to be cautious about early PSA screening

published date
November 27th, 2006 by

Another reason to be cautious about early PSA screening

Some researchers now advocate starting PSA screening for prostate cancer at age 40, rather than 50. The idea is to establish a baseline that is useful in interpreting scores later on. I expressed my objection on the basis of the stress of false positives. However, I didn’t think about the potential pain of the biopsy itself until I saw Tara Parker-Pope’s Health Mailbox column about it in the Wall Street Journal. Lots of readers wrote in and a good number had something unpleasant to say about the procedure. It’s anecdotal information but worth considering.

First, on the positive side:

“It was totally painless. I would suggest that routinely calling it a painful procedure is a mistake. It depends on the doctor’s skill and how the patient reacts to the anesthetic, and can range from totally painless on up.”

“I just went through the procedure yesterday… Piece of cake…”

Others were less encouraging:

“…I had six biopsies, and each was worse than the last. True, I had no anesthetic, and I can tell it you, it really smarts. Then for quite a while you have bloody red ejaculate, which is another turn-off they don’t seem to mention.”

“The biopsy was for me terrible. I have learned that like so many things with prostate cancer it varies greatly from one man to the next. The prostate surgery itself was a piece of cake by comparison.”

From my perspective, it’s worth taking into account the physical and emotional downsides of a biopsy when deciding whether to have a PSA test in the first place.

Disclaimer: I’m not offering medical advice. Figure out with your doctor what makes sense for you.

The diagnostic crisis in child psychiatry

published date
November 12th, 2006 by
The diagnostic crisis in child psychiatryThanks to Mickey for his perspective on the chaos in diagnosis in child psychiatry, described in yesterday’s New York Times. (What’s Wrong with a Child? Psychiatrists Often Disagree):
At a time when increasing numbers of children are being treated for psychiatric problems, naming those problems remains more an art than a science. Doctors often disagree about what is wrong.

A child’’s problems are now routinely given two or more diagnoses at the same time, like attention deficit and bipolar disorders. And parents of disruptive children in particular — those who once might have been called delinquents, or simply “problem children” –— say they hear an alphabet soup of labels that seem to change as often as a child’s shoe size.

Psychiatrists have no blood tests or brain scans to diagnose mental disorders. They have to make judgments, based on interviews and checklists of symptoms. And unlike most adults, young children are often unable or unwilling to talk about their symptoms, leaving doctors to rely on observation and information from parents and teachers.

““Psychiatry has made great strides in helping kids manage mental illness, particularly moderate conditions, but the system of diagnosis is still 200 to 300 years behind other branches of medicine,”” said Dr. E. Jane Costello, a professor of psychiatry and behavioral sciences at Duke University. “On an individual level, for many parents and families, the experience can be a disaster; we must say that.”

The main problem is that these diagnostic labels are findings, not diseases. A good example of this problem is attention deficit disorder, which in many families seems due to a single autosomal dominant gene. Despite this genetic simplicity, people with attention deficit disorder typically have other disorders too, including oppositional defiant disorder, conduct disorders, as well as affective, anxiety, learning disorders and even poor handwriting. This is not surprising – being overwhelmed with sensory input, as occurs in attention deficit disorder, could easily produce these multiple symptoms.

All these labels are based primarily on symptom checklists. According to the American Psychiatric Association’s diagnostic manual, for instance, childhood problems qualify as oppositional defiant disorder if the child exhibits at least four of eight behavior patterns, including “often loses temper,” ““often argues with adults,”” ““is often touchy or easily annoyed by others” and ““is often spiteful or vindictive.”

Dr. Darrel Regier of the American Psychiatric Association, who is coordinating work on the next edition of the associationՉ۪s diagnostic manual for mental disorders, due out in 2011, said that researchers would focus on drawing distinctions among several childhood disorders, including bipolar disorder and attention deficit disorder.

““We wouldn’t disagree that criteria for these disorders currently overlap to some degree,” Dr. Regier wrote in an e-mail message, “and that a significant amount of research is under way to disentangle the disorders in order to support more specific treatment indications.”

The Chinese Restaurant Menu approach used in the diagnostic manual is part of the problem since it combines rigidity and ignorance. A statistical pattern matching approach would be an improvement, but major progress will require new knowledge. Once we start to make progress the pace of advances will increase: once we have gene tests for a few diseases, progress in other diseases will also accelerate since the bin of undiagnosed patients will become simpler.

From which disease will the first advances come? Attention deficit disorder should be an early success because it often has such simple inheritance. Why don’t we have an attention deficit disorder gene yet? One difficulty may be that many single genes can cause attention deficit disorder and this heterogeneity on a population level messes up positional cloning studies. Another problem is that it can be difficult to make the diagnosis of attention deficit disorder in females, leading to data too messy for positional cloning studies.

If genetic heterogeneity is the problem a more promising strategy may be to test candidate genes in small families in which all patients share the same problem gene. This can work if you understand the biology, but since the presumption that dopamine transmission problems underlie attention deficit disorder has not borne fruit it would not be surprising if a dopamine disorder is the wrong hypothesis.

It sounds like we are in a rut, but there are enough MDs with basic science experience floating around and the cost of sequencing a gene is getting so low that someone is going to hit the bulls-eye with a good hunch on a different candidate gene.

PSA at 40?

published date
November 7th, 2006 by

PSA at 40?

Prostate Specific Antigen (PSA) is a widely-used screening test for prostate cancer. Unfortunately these tests cause a lot anguish: an elevated PSA doesn’t usually mean prostate cancer (only 25-30 percent of cases with elevated PSAs are prostate cancer), but it often means a biopsy and a lot of angst.

According to the National Cancer Institute:

Using the PSA test to screen men for prostate cancer is controversial because it is not yet known if this test actually saves lives. Moreover, it is not clear if the benefits of PSA screening outweigh the risks of follow-up diagnostic tests and cancer treatments. For example, the PSA test may detect small cancers that would never become life threatening. This situation, called overdiagnosis, puts men at risk for complications from unnecessary treatment such as surgery or radiation.

So I was a little surprised to read that the authors of a new study are advocating starting PSA testing even earlier: at age 40 rather than age 50. It’s counterintuitive, but the reasoning is that if a patient has a longer baseline it will be easier to tell from the PSA whether they in fact have cancer. For example, as I read in the Wall Street Journal (Beginning Prostate-Cancer Screening At Age 40 Holds Benefits, New Data Show):

[A] 40-year-old man who has a PSA of 0.8 at 40 and then a score of 2 a few years later likely is at high risk for aggressive cancer. But if he has a score of 2 and no prior PSA test, he likely would be told he’s at low risk. By the time his PSA score reaches 4 and doctors decide to intervene, it might be too late to save him.

Meanwhile a 50-year-old man with a PSA of 4 likely will be told he needs a biopsy. However, if that man at the age of 40 had a PSA of 2, the 10-year trend suggests he likely doesn’t have cancer or at least not an aggressive cancer.

“It’s the same threshold of 4,” says Dr. Carter. “But the two people got to that threshold at much different rates. I see this as a way to decrease the men who have biopsies and identify the men with lethal disease.”

The logic sounds good, but it makes me nervous. I’m turning 40 next year and I think I’ll wait till I turn 50 to start testing. (I’ll see what my doc thinks before deciding.) I don’t have any of the prostate cancer risk factors and I’m as scared of having a false positive as I am of prostate cancer itself. In 10 years, when I’m 50 maybe there will be a better test and it won’t matter that I don’t have baseline PSA data.

ICE is cool but primitive

published date
October 19th, 2006 by

ICE is cool but primitive

When rescuers or emergency room personnel want to contact next of kin, they have a tool that wasn’t there in the past: cell phones. Many patients have cell phones, and those phones often contain directories of phone numbers. However it’s often hard to figure out who to call. Spouses are often listed by name instead of relationship, “Mom” might have Alzheimer’s of be a code name for someone’s drug dealer, and so on.

ICE stands for “In Case of Emergency.” The idea, which seems to have gained popularity from last year’s London bombings, is to put ICE in front of emergency contact names. For example, “Mom” becomes “ICE Mom,” making it easy to figure out whom to call. It sounds like a good idea, and a simple one.

It would also be nice to have one’s full or partial medical record on the phone. Maybe it would be a good idea to include a listing that says ICE Medical Records and then have an entry with important info (like allergies or chronic conditions if the phone allows text fields) or an 800 number that has access to the patient’s personal health record. It could also be a number that returns the patient’s PHR info in response to a text message. Handset makers could even include an ICE button.

There is a bit of a problem for people like me who use voice dialing. If I add ICE in front of frequently called names I’ll have to say “ICE Mom” or “ICE John” instead of just Mom or John. However a way around that could be to make duplicate entries, one with ICE in front and other not. They can have the same phone numbers associated with them.

I think I’ll give it a try. Now, we just need to make sure people know to check for it.