Last time I saw my Primary Care Provider I asked if I needed to keep taking my Crestor, a drug to reduce cholesterol. She pulled out the clinical practice guideline for the treatment of blood cholesterol released by the American College of Cardiology and the American Heart Association. Every couple of years I ask her the same question. Do I really need this? Does it have long-term side effects I should worry about? I’m 63 years old, when can I stop because I’m too old? With insurance it costs me $300 a year out-of-pocket.
How many clinical practice guidelines are there? I could find no specific count – thousands I’m sure. The Agency for Healthcare Research and Quality (AHRQ)’s National Guideline Clearinghouse lists 1975 guidelines.
Who writes guidelines? What is the evidence to support guidelines? Which guidelines apply to me? How often do guideline writers rewrite them when new evidence comes to light? How long does it take for people at the center to become aware of guidelines and use them?
It is frequently stated that it takes an average of 17 years for research evidence to reach clinical practice.1,3,15 Balas and Bohen,16 Grant17and Wratschko18 all estimated a time lag of 17 years measuring different points of the process. From <http://jrs.sagepub.com/content/104/12/510.full> Seventeen years!! OMG. That’s just evidence to guidelines, not guidelines to practice. Does my insurance pay for use of guidelines? How is payment for clinicians affected by guidelines? What if I’m the exception?
So many questions!!
This week I spoke with someone working to improve the dissemination of guidelines. I’m fascinated, I’m supportive. I can’t help wondering, what if I’m an exception to the guideline? I could be an exception because I don’t fit the picture clinically or because it doesn’t align with my life flow or values. For cholesterol treatment, maybe I can’t afford the $300 per year or maybe I’m opposed to take blood altering medication. It seems that exceptions are important. Why didn’t I take and what ended up happening to me 5-10 years down the line? Maybe nothing, maybe I had a stroke or heart attack. I could contribute to the evidence. Something like 90% of the people who recorded the reason that they didn’t take the cholesterol medicine had no heart attack or stroke. Oh my aching brain!
Whew! It seems to me the more information about any one disease and the more meds out there, the harder it is to make decisions–too many variables, too few ways to organize available information in a format that’s easy for ordinary people to access and understand. Thanks for this, Danny.