LYMEPOLICYWONK: IDSA GUIDELINES LACK EVIDENCE—DON’T CALL IT EVIDENCE BASED IF IT’S JUST YOUR OPINION
A recent study evaluated over 4,200 IDSA guideline recommendations and concluded that more than half—really?—more than HALF? were based on no more than expert opinion and anecdote, not evidence. As it turns out, only 1 of 7 treatment recommendations were based on high quality research trials. According to a recent article in Reuters, in the absence of a strong evidence base “the recommendations end up depending largely on who's on the guideline-drafting panel and any assumptions or opinions they may bring to the process.” The IDSA likes to paint patients who oppose its Lyme guidelines as “anti-science” misfits, but the truth is that patients just want some honesty and transparency. We’d like a little more evidence and a lot less opinion. We’d like more treatment options when the evidence is poor. Evidence based medicine is supposed to be about wringing the bias out of the process, but expert opinion is all about bias. One doctor who served on many IDSA panels acknowledged that “we are operating on a lot of bias. We recognize we have bias, but it’s impossible to eliminate when there is a dearth of data.” Well, this is clearly wrong. It is easy to acknowledge the lack of evidence and provide treatment options. Just like the prostrate guidelines do. More after the jump. .. .
You really should read the Reuters article by Frederik Joelving, Medical “best practice” often no more than opinion, in full.
And for the more ambitious among you, I recommend reading the full study: Lee, D. H. and O. Vielemeyer (2011). “Analysis of Overall Level of Evidence Behind Infectious Diseases Society of America Practice Guidelines.” Arch Intern Med 171(1): 18-22.
Here are some highlights:
By contrast, more than half the recommendations relied solely on expert opinion or anecdotal evidence.
The new analysis, published Monday in the Archives of Internal Medicine, is based on more than 4,200 recommendations made by IDSA between 1994 and 2010.
“These data reinforce that absolute certainty in science or medicine is an illusion,” an editorial in the journal notes. “Rather, evaluating evidence is about assessing probability.
“Doctors across the world look to guidelines when deciding how to treat patients, and insurance companies may use them in coverage decisions.
You can follow additional comments on Lyme policy at www.lymepolicywonk.org. You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.
Well, it isn't something that they were doing that Lyme patients were unaware of.
I think the IDSA and insurance companies will go about business as usual.
I wonder just how much control the insurance companies had over the guidelines. It pratically looks like they wrote them.
I can't tell you how many doctors have qouted those damn guidelines as Gospel to me. I hope each one of them reads this report. Hopefully it is a big thick report and it falls off a shelf somewhere and bounces off their heads first.
As a former scientist, I am always surprised at the level of ignorance about basic research thinking among some MDs.
"We recognize we have bias, but it's impossible to eliminate when there is a dearth of data".
If you have a dearth of data, then you say, "I can't not offer you more than conjecture due to a dearth of data". There is no way I could have published a paper, let alone made policy recommendations, with my opinion and "a dearth of data".
I can not understand how these doctors can tell me and my patient's that they do not suffer from a chronic infections when they are predictably experience Herxheimer reaction after initiation of the appropriate antibiotics and feels better when the appropriate long term antibiotics with healthy diet and exercise over and over. When I tell my colleagues about the successful outcome, they just say that my patients are "crazy, thirsty for a medical diagnosis and my treatment is nothing but a dangerous placebo.
Not surprising, as there is something much bigger going on with Lyme and the Multiple Tick Borne Co-Infections that accompany it. There is too much research from the past, much from ISDA members themselves, explaining persistent symptoms to active, ongoing infection. However, they abruptly changed their opinions without explanation sometime in the early to mid 90’s. Much cover up and then misinformed Dr.’s citing incorrect science and evidence.
I was treated for lym and mine was hardcor and if it was them or there family they would not question they would just want it gone.If you felt it or saw it you would understand.I hope none of them or there family have to go through it and if so I would love to see how they would deal with iwith it.I bet they don’t take there time to get the ball rolling