IDSA revising lyme guidelines

[philamom]

Wonk & Hard Science on Lyme | LYMEPOLICYWONK: Speak Up Now! The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter

LYMEPOLICYWONK: Speak Up Now! The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter

03 October, 2011 Font size:

 

Click Above to Share ArticleThe 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!

 

To participate in this survey, click here.

 

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.

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Comments (24 posted):

yolanda on 04 October, 2011

[philamom]

Sorry...survey is at lymedisease.org (formerly CALDA)

[SSS]

It is a very EASY survey, too- Quick. Did mine yesterday. Thanks for posting the info.

[NancyD]

Thanks for posting. Did it.

[mdmom]

Bumping this topic to keep it at the top of the list....

 

I took the survey. It only took a few minutes.

 

I am going to fill one out for each of my children dealing with Lyme as well. The more responses, the better.

[Suzan]

It would not let me take the survey more than once from my computer. I can try from my computer at home to take for my kids. I made the suggestion in comments to offer the option to answer for young children but I'll try to actually submit them.

 

Susan

[philamom]

It would not let me take the survey more than once from my computer. I can try from my computer at home to take for my kids. I made the suggestion in comments to offer the option to answer for young children but I'll try to actually submit them.

 

Susan

Hi Susan! I don't know if they fixed the problem but I just took the survey for myself from the same computer. I completed it the other day for my daughter. hth

[mama2alex]

Hope everyone is planning to respond! I am about to fill out the survey and noticed an update on the LymeDisease.org web site:

 

http://www.lymedisease.org/news/lymepolicywonk/835.html

 

They've had over 2,000 responses so far! Let's keep it going. I plan to post this at our doctors' offices.

[Suzan]

Hi Susan! I don't know if they fixed the problem but I just took the survey for myself from the same computer. I completed it the other day for my daughter. hth

 

I deleted my cookies and I was able to take it again. Thanks!