Wednesday, October 22, 2014

1 in 20 Americans are misdiagnosed every year


A paper published in April found that about 12 million Americans, or 5% of adults in this country, are being misdiagnosed every year. This news exploded all over Twitter. Anxious reports from media outlets such as NBC News, CBS News, the Boston Globe, and others fanned the flames.

The paper involves a fair amount of extrapolation and estimation reminiscent of the "440,000 deaths per year caused by medical error" study from last year.

Data from the authors' prior published works involving 81,000 patients and 212,000 doctor visits yielded about 1600 records for analysis.

A misdiagnosis was determined by either an unplanned hospitalization (trigger 1) or a primary care physician revisit within 14 days of an index visit (trigger 2).

A quote from the paper [Emphasis added] : For trigger 1, 141 errors were found in 674 visits reviewed, yielding an error rate of 20.9%. Extrapolating to all 1086 trigger 1 visits yielded an estimate of 227.2 errors. For trigger 2, 36 errors were found in 669 visits reviewed, yielding an error rate of 5.4%. Extrapolating to all 14,777 trigger 2 visits yielded an estimate of 795.2 errors. Finally, for the control visits, 13 errors were found in 614 visits reviewed, yielding an error rate of 2.1%. Extrapolating to all 193,810 control visits yielded an estimate of 4,103.5 errors. Thus, we estimated that 5126 errors would have occurred across the three groups. We then divided this figure by the number of unique primary care patients in the initial cohort (81,483) and arrived at an estimated error rate of 6.29%. Because approximately 80.5% of US adults seek outpatient care annually, the same rate when applied to all US adults gives an estimate of 5.06%.
The diagnoses that were missed and the implications of the misses were not described, but one anecdote from a paper the study was based on mentioned carpal tunnel syndrome as one of the diagnoses.

Another quote from the paper: Although it is unknown how many patients will be harmed from diagnostic errors, our previous work suggests that about one-half of diagnostic errors have the potential to lead to severe harm. While this is only an estimate and does not imply all those affected will actually have harm, this risk potentially translates to about 6 million outpatients per year. [Emphasis mine]

Is a 14-day interval between the supposed miss of the diagnosis and an admission or a return visit really a huge problem?

Because we don't really know how many patients were actually harmed by these supposed diagnostic errors, we can't tell. If carpal tunnel syndrome was the delayed diagnosis, I'd say "probably not."

Half of the patients in the study were from a VA and the other half were from a large clinic cohort so these diagnostic error rates may not be generalizable to the entire population of the US.

The words "misdiagnosis" and "error" were used interchangeably. As the authors admit, every misdiagnosis is not necessarily the result of a physician's error.

Among the limitations of the study noted in the paper [but omitted from all news reports] was that it was not designed to identify the root cause of the delayed care or missed diagnosis. For example, reviewers noted many cases where delays in follow-up were beyond the control of primary care providers, such as difficulty obtaining timely appointments with specialists [which we now know is a huge problem at many VA hospitals], or patients failing to show up at scheduled appointments.

No doubt diagnostic errors occur, but this paper does not tell us how many people were seriously harmed, what the root causes of the errors were, who was responsible for the errors, or most importantly whether diagnostic errors really occur in 5% of Americans.


Diane said...

An article that backs up what so many patients already know and have suffered from, Thanks for the share! Posting to facebook now since twitter has already got it covered! :-)

Skeptical Scalpel said...

Thank you for posting it.

Diane said...

Welcome! LOL Don't get me wrong, we have some terrific Drs and we truly appreciate them,their skills and opinions. Unfortunately, the vast majority of patients with "newer" or "rarer" disorders are often misdiagnosed. (Often for years, again and again and again and prescribed inappropriate and sometimes harmful treatments) For that population of patients(admittedly smaller population) seeing an article like this is just a great dose of medicine . I do understand the concern over the loopholes in the data/terminology.

Skeptical Scalpel said...

Some people are misdiagnosed by doctors and harmed. I just don't think it is 5% of the population.

frankbill said...

What ever the % it is a problem. It is likely to get worse before gets better. There are not currently enough trained health care provides to take of the ageing population. This is going to results in shorter time providers can spend Dx you.

The VA is all ready trying to keep up with both the ageing Vets and new Vets coming into the system.

Providers are going to have accept that sometimes there patients know more about what is wrong with them the provider does.

We as patients are going to have to be better informed to help provider DX us.

Bonus systems where used need be based on input from the patients as they are the only ones that know how good provider is.

Need to put in place a system that shows providing clinics record on there rate of Dx X disease and compare to other providing clinics nation wide. Then this information can be compared to occurrence of X disease in population both local and nation wide. If % of differences is high the look at problem and correct problem if necessary.

This system can be automated by EMR.

Anonymous said...

If it is simple things, most people are fine. It is when doctors look at the computer bloodwork, and oh its fine, or throw it into the bucket list of "all in your head" because they don't do due diligence, or its a zebra, you can forget it. I've seen way too many who practice their own way without some EBM to it. If it is a zebra, start using a scientific type method to rule things out, etc. rather than just give up or a shot in the dark type of thing.

Moose said...

There is a lot of weight based prejudice in medicine. Obese people are often assumed to have problems because of their weight, with assumptions made without actual examination. Underweight people are often assumed to have eating disorders. "Normal" weight people, ironically, sometimes find that concerns about things normally attributed to weight at one extreme or the other (ex. insulin resistance or eating disorders) are brushed aside because of the perception that they don't happen to their weight group.

On the other hand, this is a poorly done study with crappy science and math used. It is too easy to let perception bias blindly believe what it says, and I would love for this type of study to be repeated a few times, with better science behind it.

frankbill said...


Sounds like you are having a problem getting DX. As a results of my trying to get a DX they have Dx me with somatiform d/o.

They do this when Sx and out of range labs test don't match there in the box thinking.


Right about Dr not looking past one being Obese

Skeptical Scalpel said...

Diagnosis can sometimes be very difficult. It's much easier to criticize when you know what the diagnosis turned out to be.

frankbill said...

Very hard not to criticize when you have no DX after 9 years.

Anonymous said...

Frankbill, you aren't kidding,

especially in my case: the original surgeon knew a previous diagnosis. Rather than checking that as the cause of symptoms (and it would have explained them alone), I was labelled with the "all in your head" thing. Well not only did the surgeon not fix the original problem, but 3 other things cropped up, all duly reported to him. Still all my fault.

Sorry, I can buy the diagnosis being hard in some instances, but it seems there is little attempt by doctors now to start ruling things out, give differential diagnoses, like a logical tree of not this, try this, type of thing. Even if you have 10 min., in a follow up, tell patient, we've tried X, that didn't work, lets try Y and see if that is the problem. That doesn't take 10 min.

Anonymous said...

For roughly a year, my neighbor was told a sarcoma on her leg was a benign cyst. My mom was told she was crazy when she reported to her PCP that she couldn't breathe. 3 hours later the ER docs drained 1 liter of fluid from her chest. She had cancer, too. For a couple of years, I was told I was crazy for saying I got tired easily, had dyspnea on exertion, and had muscle pain. Rubbish, I was told. Too young for all that. You must have some sort of somatoform disorder. Then I found a doctor who was convinced I had rheumatoid arthritis. That diagnosis stuck with me for another two years. Any of my symptoms that didn't fit the RA profile were at first ignored by that doctor, then described as fibro, then finally she decided that I just suck at "coping" (she told me this directly). Turns out I have a muscle disease with the added complication of heart failure. I guess it's obvious that I'm not dead yet, but clearly the future doesn't look too rosy for me. I have to wonder if my long term prognosis would be better if I didn't have so many doctors behave so terribly towards me and disregard (or put down) much of what I was telling them.

I for one totally believe the 5% statistic.

Skeptical Scalpel said...

Based on your experience, I don't blame you for accepting the paper's conclusions. I'm sorry that you suffered. I hope you are feeling better.

frankbill said...

While there are some that have somatoform disorder for others it is a cop out DX. Per Wikipedia
A somatic symptom disorder, formerly known as a somatoform disorder,[ is a mental disorder characterized by physical symptoms that suggest physical illness or injury – symptoms that cannot be explained fully by a general medical condition or by the direct effect of a substance, and are not attributable to another mental disorder In people who have a somatic symptom disorder, medical test results are either normal or do not explain the person's symptoms, and history and physical examination do not indicate the presence of a medical condition that could cause them.

Note it says medical test results are either normal or do not explain the person's symptoms.

This does not say there are no ad normal test results. So from this it can mean the your Dr doesn't have a reason why your test are ad normal so since Dr doesn't have a clue why test results and ad normal you get DX with somatoform disorder.

Anonymous said...

The other huge huge problem with this? The medical research clearly indicates what the problem is. Just no doctor is going to read the research. I note that is clearly an issue, as you might have a disease listed in medical research but your doctor doesn't want to give you the diagnosis nor do they want to treat you for it.

That is why somatoform disorder is going to be used to CYA the medical groups due to the high rate of delayed and missed diagnosis. They can use that to stall for time with the laws that say you have to file within X timeframe for a problem.

Anonymous said...

Anon wrote "I guess it's obvious that I'm not dead yet, but clearly the future doesn't look too rosy for me. I have to wonder if my long term prognosis would be better if I didn't have so many doctors behave so terribly towards me and disregard (or put down) much of what I was telling them.

I for one totally believe the 5% statistic. "

I believe it is more than that. I started talking with other patient harm groups and the more I see, the more I start to trade stories, the more I can figure out there is a lot wrong in terms of diagnosis. I don't think we train new doctors any more and too much hubris and ego don't help. I wish doctors would have the gumption to look at medical research a little. That would help. When you google and find answers, and then its born out, it not only destroys trust in the profession, you then have all the nastiness from the medical profession because they screwed up and don't fix it.

frankbill said...

My first thought on reading this posting was a can of worms was opened. It doesn't take much searching to find the internet is full of groups that are made up of missed Dx. In the yahoo group I am in there are 1050 that are or were missed DX. I could give reasons why so many are missed DX. But not sure if that is going beyond this posting.

One thing is the it's all in your head DX is a cop out. Also this Dx makes a lot of money for the drugs companys that make antidepressants.

Anonymous said...

Frankbill: My rheumatologist was shown objective tests from other specialists which indicated something was wrong with my cardiac and skeletal muscle and this doctor INSISTED the tests were "normal" and told me to go and exercise some more. He could not accept that he was wrong and he made himself feel better by blaming me.

And, Anon? I'm with you on the theory that it's probably much more than 5%. I only cited three examples that I am aware of where it was more than just a situation where the diagnosis was elusive because the practice of medicine is difficult and doctors just made honest mistakes. I am actually aware of several others.

My neighbor's case still baffles me and apparently was such a clear cut case of malpractice that the doctor who finally gave her the cancer diagnosis ENCOURAGED her to file a malpractice suit against his colleague. She died because by the time she was given the correct diagnosis, the sarcoma had spread to her lungs and it eventually went to her brain. She was only 64.

My mom had an essentially uncurable cancer so I can't say that her PCP's negligence caused her death, but I cannot understand how her PCP missed the fact that she had a significant amount of fluid in her chest. I may be just a stupid layperson, but I find it hard to believe that the liter of fluid that the ER docs removed a mere three hours later built up suddenly after my mom left her PCP's office.

Anonymous said...

I think it's also important to note that when a doctor puts "somatoform disorder" in a patient's file, it really means that they are a head case. Same thing with fibromyalgia. And if you find that difficult to believe, go ahead and read a bunch of medical blogs written by anonymous physicians and nurses, and take a look at how they flat-out mock these patients.

Anonymous said...

Replying to anonymous ...

Its not said there, but not everyone wants to sue. Some people just want answers and things fixed. Imagine that? While doctors are complaining about working for free (welcome to being salaried!) and their lowered pay, I don't hear a hue and cry over changing medical education to better equip doctors, doing something about salaries of the ABIM heads made to gouge the regular working patient treating physician, serious MOC change, and working out to get patients more involved in care and taking some responsibility and it being a team effort.

Skeptical Scalpel said...

If you have experienced a missed diagnosis and talk with others who also have, I am sure your perception is that everyone in the US has been misdiagnosed. That is not so.

I agree that many lawsuits are generated by failures of MDs to communicate. I am not sure how to fix that.

frankbill said...

It is true that not everyone is not misdiagnosed. But to many are being misdiagnosed.

I don't think lawsuits are the best answer either. Do think the States Medical Boards need to do a better job in helping with this problem.

If current research says X dieses occurs in 20% of population and old research had said it occurred in .5% of population. Need to make sure Dr are up to speed on new research.

One such dieses is hyperaldosteronism Once Dx it is very treatable The problem is Most Dr still believe they will most likely never see a case of it so do not look for it.

Since the VA I go to is affiliated with Dartmouth Medical School am seen by Dartmouth residents. Since I have many SX of hyperaldosteronism I have asked many Dr at the VA if it is possible that I have it am always told it is very rare so not likely I have it. This includes the Dartmouth residents so they are not current on new research.

State Medical Boards can make sure DR are up to speed on current research. We as patients have the right to report Dr that we feel are not doing there job.

frankbill said...

One of the reasons given for not DX someone is it costs to much to do all that testing.

artiger said...

"Misdiagnosis" carries a negative connotation, but it's not always a foul. I misdiagnosed someone last week. Patient was sent from another facility with RLQ pain and a CT scan that showed "stranding of the mesentery around the appendix, consistent with appendicitis". So I took out the appendix and sent the patient home, feeling much better. Path report reported a normal appendix (yes, I told the patient, who is still doing well). Did I and someone else misdiagnose? I guess so. Do I think I should have done something differently? No.

Anonymous said...

"If you have experienced a missed diagnosis and talk with others who also have, I am sure your perception is that everyone in the US has been misdiagnosed. That is not so."

Come on, no one is saying that. I hate it when docs do this. It's another way of suggesting that we laypersons are unrealistic. Stupid, even.

No one is saying that everyone has been misdiagnosed.

Skeptical Scalpel said...

Artiger, I totally agree. It is very hard to go against a CT reading like that. If you do so and are wrong, you have no defense.

Anon, you took my comment a little too literally.

artiger said...

Thanks Scalpel, but my larger point was that misdiagnosis isn't always this horrible, harmful phenomenon that the above article makes it out to be. Kind of like all the hubris about medical errors. It's all in the definition.

Anonymous said...

Hey artiger,

Can you tell me where those fibromyalgia and doctors ridiculing them websites are? I'd like to look for my own knowledge. I have weakening joints that are explained by nutritional issues, if someone reads the research. I don't have pain, so since it is idiopathic, they're calling it fibro. I went ... I don't fit the category.

I'd like more info from a doctors' point of view.

Skeptical Scalpel said...

There are too many to list. Google "fibromyalgia crazy" and see for yourself.

I will not comment on whether they are accurate or not.

artiger said...

Anon, as Scalpel said. I'm a surgeon so I am far from a fibromyalgia specialist. I think you can find plenty of sites, pro and con, to peruse. I was commenting on the use of the word "misdiagnosis".

Anonymous said...

"I will not comment on whether they are accurate or not."

That pretty much tells me what you think about fibro patients. Good thing my fibro turned out to be a muscle disease (rare form of MD), I guess. Without a shred of sarcasm, I'd much rather be crippled than mislabeled as mental. That is its own hell that I wouldn't wish on anyone.

frankbill said...

There is some that say there is a link to fibromyalgia and low potassium. Since each of us have our own level of potassium needs say 4.3 the so called normal of 3.5 may be to low for our body to function at a normal level.

The other part of this sodium. At some point the amount of sodium we eat has an effect on how much potassium we hold on to.

Recommended amount of sodium is about 2500MG a day. Many of us eat 7000MG + a day. How much sodium can we eat and not have some adverse effects is still being debated.

Is fibromyalgia a disease or the result of something like eating to much sodium?

Anonymous said...

Anon and Skep:

"Without a shred of sarcasm, I'd much rather be crippled than mislabeled as mental. That is its own hell that I wouldn't wish on anyone. "

Agreed. Having been misdiagnosed on a couple of occasions (including fibromyalgia as I do not have and have never complained of muscle pain at all), I find it comforting to know that when doctors are unable to explain an issue or find a problem, we're crazy. What about doctors who don't explore options? I've seen this on more than one occasion when a doctor just doesn't want to be bothered, doesn't know the correct definitions for a disease, isn't thorough, etc. and labels the patient, harming them long down the road for a fake medical disease, when they simply said forget it and tossed another patient out to the dogs. The fault was the doctors', not the patients.

I want to know what docs call it when they make blatant screw ups. I've seen 5 other docs say its X and one doc literally nail me in my records saying it was Y and he's right. That was past every test and research saying he wasn't. More than once that's happened.

So if we have to put up with that kind of "treatment" why can't we patients do something to doctors who pull stunts like this? I've never seen why a grad degree makes someone a competent psychologist/psychiatrist, when most of them dont even know what the DSM IV or V is. Or even admit to doing something over the docs who violate laws and get away with it - seen that too. Doc caught with DUI's and the medical board does NOTHING.

Anonymous said...

Frankbill, I never had a sodium problem. My BP is low, I'm not fat, never had anything in my history suggesting I have serious depression or other mental illness. I have a defect in my genes that was never considered because it was easier to label me as nuts. Until the day I found a specialist with empathy and an open mind, and most importantly, a willingness to do a little work that couldn't be billed to insurance, and who to this day, apologizes profusely for what his colleagues put me through. He is an angel and I owe my life to him.

frankbill said...

I am a Yahoo group where low potassium is talked about a lot. Some are mis Dx with fibromyalgia and later when given the right Dx and treatment there fibromyalgia gets better.
This would seem for some that lower blood potassium give same Sx as fibromyalgia. When Meds and or changes to lower sodium and increases potassium in diet make fibromyalgia better. Then for some this would seem sodium and potassium play a part in fibromyalgia DX.

This is not to say there are other causes and treatment for fibromyalgia Just that many are given the wrong DX of fibromyalgia.

Hopefully you have done a lot of research on your gene defect so you know all your treatment options.

frankbill said...

There is resent research that salt may play a role in Multiple Sclerosis and other autoimmune diseases. As more research is need to know if this is the case. It could turn out to be a false lead. But if true it will change how they are treated.

Anonymous said...

I suffered for one year with horrible pain, loss of appetite, lethargy, weakness, cold. I could not get out of bed. Doctors had no idea what was wrong. After a year I figured it out but the doctors would not listen to me. My primary care doctor told me it was all in my head and that I was exaggerating my symptoms. What made me angry is that I have never, ever complained about anything until this horrible episode. I finally found a doctor who believed me. Hypothyroidism! I went untreated for two years! Did a lot of damage to my body too.

The doctor who started me on medication to get me feeling better was my Psychiatrist until I could find an endocrinologist. Thank goodness I did not have a deadly or rare condition. Although I did feel as if I were slowly dying. I was super depressed and was ready to end it all, no kidding.

frankbill said...

Most likely All TSH tests were within normal lab range. TSH is test of a pituitary hormone so doesn't really tell if thyroid is working right.

Most Dr only look at TSH and because it is so called normal they don't look at thyroid hormones

Skeptical Scalpel said...

Anon, I am truly sorry it took so long for someone to finally listen to you. I hope you are feeling better.

Frank, you are only partially correct about TSH. It is a pituitary hormone, but it is an essential thyroid test. If the T4 level is low, the TSH level can determine whether the cause is a disease thyroid or a diseased pituitary gland. Here's a link explaining it.

frankbill said...

But TSH be it's self may not show what is going on. If it low or high normal you might have adnormal T3 of T4 levels. But because TSH is within normal range they fail to test T3 or T4.

Something that seems to be lost on Dr education is the need to look the whole patient. Now they don't even have you roll up your sleeve to take blood pressure.

frankbill said...

At the posting

There was a posting about education of patients and UpToDate.

My reply to this was
In reply to educating us patients. First bit about uptodate. I did try uptodate for researching hyperaldosteronism. It is one of the many sources I have looked at. I found it to a bit one sided as other ongoing studies have different information then what Dr Young put in uptodate.

This leaves a question does uptodate really have the best information about the latest research?

Now If one is looking information on do statins prevent heart attacks. This is one of the sites that comes up. Is what is stated here fact or is someone just trying to sell something. Maybe a bit of both.

I always try to look at pubmed but many times you need to pay to see the whole paper. Something that many can not afford to do.

In reply

Jeffrey Patten said...
To frankbill:

Is stated Primary Aldosteronism is the most common definable cause of resistant hypertension. Specific therapies for primary aldosteronism exist but may not be offered unless a firm diagnosis is determined.

The problem is most providers never look for Primary Aldosteronism in the first place. They never read the current guigelines or they don't belive them. The first test is a screening test but by time many do this test you are on meds that can cause false test results. So testing on meds isn't going to give good results.

frankbill said...

Current research states somewhere between 50 and 80% of the time surgery will cure Primary Aldosteronism. Studies by Kline GA are looking at ways to best determine when surgery will cure Primary Aldosteronism.

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