1. About this survey
This survey is being conducted by LymeDisease.org (FORMERLY CALDA). Two conflicting sets of guidelines for the diagnosis and treatment of Lyme disease exist: those developed by the Infectious Diseases Society of American (IDSA) and those developed by the International Lyme and Associated Diseases Society (ILADS). Both sets of treatment guidelines are more than 5 years old and are in the process of being revised.
The Institute of Medicine has recently said treatment guidelines must take into account patient perspectives in order to be considered trustworthy. This survey asks you about patient willingness to choose treatment options and patient attitudes toward risk versus benefit of Lyme treatment. It also asks about individualized treatment of Lyme disease.
Over 4,000 patients responded to our last survey, making it the largest survey of Lyme patients ever conducted. The results of that study, which found that Lyme patients suffered a significant burden of illness and had difficulty obtaining the health care they needed, were published in a highly regarded peer reviewed journal, Health Policy.
Your responses will be treated in confidence and at all times data will be presented in such a way that your identity cannot be connected with specific published data.
This survey should take 5-8 minutes. In order to progress through this survey, please use the following navigation links. Note that once you start the survey, you will need to fully complete it. (You cannot save it and return to it later.)
--Click the Next>> button to continue to the next page
--Click the Previous>> button to return to the previous page
--Click the Exit the Survey Early>> button if you need to exit the survey
--Click the Done>> button to submit your survey
This survey is limited to individuals living in the US who are 13 years of age or older who have been diagnosed with Lyme disease. Only submit one survey regarding any one person. To avoid duplicates, only one response is permitted per computer.
If you have any questions, please contact me at lbjohnson@lymedisease.org For more information on LymeDisease.org, go to www.lymedisease.org.
The Institute of Medicine has recently said treatment guidelines must take into account patient perspectives in order to be considered trustworthy. This survey asks you about patient willingness to choose treatment options and patient attitudes toward risk versus benefit of Lyme treatment. It also asks about individualized treatment of Lyme disease.
Over 4,000 patients responded to our last survey, making it the largest survey of Lyme patients ever conducted. The results of that study, which found that Lyme patients suffered a significant burden of illness and had difficulty obtaining the health care they needed, were published in a highly regarded peer reviewed journal, Health Policy.
Your responses will be treated in confidence and at all times data will be presented in such a way that your identity cannot be connected with specific published data.
This survey should take 5-8 minutes. In order to progress through this survey, please use the following navigation links. Note that once you start the survey, you will need to fully complete it. (You cannot save it and return to it later.)
--Click the Next>> button to continue to the next page
--Click the Previous>> button to return to the previous page
--Click the Exit the Survey Early>> button if you need to exit the survey
--Click the Done>> button to submit your survey
This survey is limited to individuals living in the US who are 13 years of age or older who have been diagnosed with Lyme disease. Only submit one survey regarding any one person. To avoid duplicates, only one response is permitted per computer.
If you have any questions, please contact me at lbjohnson@lymedisease.org For more information on LymeDisease.org, go to www.lymedisease.org.