Speak Up Now! The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter04 Oct 2011
The treatment guidelines of Infectious Diseases Society of America (IDSA) are more than 5 years old. That means they will be taken off the National Guidelines Clearinghouse in January.
It also means that the IDSA is now revising those guidelines. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy.
Our last survey found that 80% of patients would not choose to be treated under the IDSA guidelines. So patient trust in IDSA Lyme treatment guidelines a big issue.
But when was the last time the IDSA asked you what you valued or what you preferred in the treatment of Lyme disease?
The answer is: NEVER.
It’s time we do something about that. We are conducting a survey to find out what you think is important about treatment options, choices, risks and benefits.
Our last survey drew over 4,000 responses. Let’s do it again and remind the IDSA that patient values are central to treatment guidelines!
http://www.surveymonkey.com/s/XLG5QTG
Your responses will be treated with confidence and at all times data will presented in such a way that your identity cannot be connected with specific published data.
The survey should take 5-8 minutes. Note that once you start the survey, you will need to fully complete it. (You cannot save it and return to it later.)
In 2009 prior to the IDSA hearing, we wanted patient voices to be heard and conducted a survey that drew over 4,000 responses.
It ended up being the largest survey of Lyme patients ever conducted in the United States.
The results of that survey were published in Health Policy in a study by Johnson, Aylward and Stricker and summarized in another blog post of mine.
Health Policy is a highly regarded peer-reviewed journal that explores health policy issues.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org (formerly CALDA).
Contact her at lbjohnson@lymedisease.org.
Comments (2 posted):
yolanda on 04 October, 2011
A change has to be made. Too many people are suffering including children.
I live in Ma and we are infected with ticks and lyme disease everywhere but are blood results tests mostly come back normal and we are told that our symptoms are in our head and told to seek counsling.
I am curantly house bound with debilitating symptoms. my life as I knew it, is gone.
Bob Mencke on 04 October, 2011
Why should any of us want to keep our name and contact info confidential. Seems the survey would carry more weight if our names were included.
We do not have leprosy or VD. If this is going to the IDSA they may want to contact some of us.
http://www.lymedisease.org/news/lymepolicywonk/831.html
© 1994-2011 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
