NEWS: Largest survey of chronic Lyme finds high disability, unemployment, medical costs
LymeDisease.org asked chronic Lyme patients the same “quality of life” questions the CDC asks about other chronic diseases. Nobody had ever done that before.
Los Angeles, CA (PRWEB) April 01, 2014
Chronic Lyme disease is associated with a poorer quality of life than most other chronic illnesses, according to a newly published comprehensive patient survey. Compared to the general population, patients with chronic Lyme disease have high disability and unemployment rates, are five times more likely to visit healthcare providers and twice as likely to be hospitalized, the survey found.
The study of over 3,000 patients with chronic Lyme disease published in the open access medical journal PeerJ on March 27th was a joint effort of LymeDisease.org and Prof. Jennifer Mankoff at Carnegie Mellon University. The survey used standard questions developed by the Centers for Disease Control and Prevention (CDC). The CDC estimates that more than 300,000 people contract Lyme disease every year in the United States.
“This study comes at an important time,” explains Lorraine Johnson, Executive Director of LymeDisease.org. “Although the number of Lyme disease cases in the US is growing, little is known about how chronic Lyme disease affects patients. We decided it was time to ask them.”
The survey found that Lyme patients reported a poorer quality of life than patients with other chronic diseases, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Fair or poor health was reported by 73% of patients with chronic Lyme disease compared to 16% of the general population.
“The degree to which this disease disrupts everyday living is not widely appreciated,” said Jennifer Mankoff, an associate professor at the Human-Computer Interaction Institute of Carnegie Mellon University and a coauthor of the study. “A better understanding of the patient perspective and experience is critical in order to deliver healthcare that meets patient needs.”
Most survey respondents reported suffering from three or more symptoms that were severe or very severe, including fatigue, sleep impairment, joint pain, muscle aches, and other types of pain. Compared to the general population, patients with chronic Lyme disease were five times more likely to visit healthcare providers and twice as likely to be hospitalized, the survey found.
Over 40% of respondents reported that they currently are unable to work because of Lyme disease and 24% reported that they have been disabled at some point in their illness. This compares with 6% of the US population who are unable to work due to illness. Physical or mental health problems limit Lyme patient functioning on 19 days per month compared to only two days per month for the general population.
“This study shows that most patients with chronic Lyme disease have severe symptoms, require lots of medical care, and suffer a low quality of life with high disability and unemployment rates,” said Johnson.
The study is available via open access (without charge). Author interviews available upon request.
LymeDisease.org (LDo) is a non-profit 501(c)(3) that serves the patient community through advocacy, education and research. LDo maintains a national network of state-based internet groups, engages the community in patient-participatory research through large scale surveys, publishes the only print journal dedicated to Lyme disease, and provides extensive information on Lyme disease through Facebook, its blogs, and its website.
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