For more than ten years, LymeDisease.org has been conducting patient surveys to bring the perspective of patients to the forefront.
We give voice to the Lyme patient community. We publish the results of our surveys either in peer-reviewed journals or as reports. We share that information with lawmakers, journalists, and others in the healthcare arena. Some of our surveys have drawn more than 9,000 responses.
This study examined health-related quality of life using standard Health Related Quality of Life questions from the Centers for Disease Control and Prevention and other government agencies to compare the quality of life in Lyme disease patients with the quality of life of people in the general population and people with other chronic illnesses. It found that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. It also found that patients visited the emergency room, had more physician visits and more overnight stays in the hospital than the general population. Many patients were unable to work or to concentrate while at work. This study was published in PeerJ, a peer-reviewed journal in 2014 and has been downloaded over 4,000 times.
This study looked at the difficulty that patients have receiving diagnosis and treatment. It was published in Health Policy in 2010. It revealed that 65% of patients with chronic Lyme disease have had to cut back or quit work or school and 25% have been on disability.
On March 24, 2015 LDo launched a survey focusing on which outcomes were most important to Lyme patients. Over 6,000 people responded. Patients contributed personal stories about how Lyme disease affected their lives and provided insights into their values. The comments were submitted to the IDSA during its guideline comment period.
One patient said: I’m the one devastated by this disease, and the truth is, you don’t know for certain how to treat it. With a condition fraught with so much uncertainty and unknown, the most we can be offered is the state of all available knowledge (even if they oppose each other), access to (and insurance that covers) all treatment approaches, and the freedom to make our own choices.
In January, 2015, we conducted a survey on the Food and Drug Administration’s proposed restrictions on Lyme testing. We included survey results when we talked to the FDA about how much the proposed regulations would harm Lyme patients. Notably, patients were unhappy with the poor quality of currently available testing, and feared they’d be even worse off if the FDA restricted the development of new tests. They were more concerned with under-diagnosis and treatment delays than the possibility of a false positive test result.