LYMEPOLICYWONK: Survey Results Published! Chronic Lyme Patients Suffer Poor Quality of Life and High Rates of Disability and Unemployment
LDo’s most recent survey of over 3,000 patients with chronic Lyme disease was published today by PeerJ. Although the Centers for Disease Control (CDC) recently increased the number of Lyme disease cases in the US from 30,000 to 300,000, little is known about how chronic Lyme disease affects patients. We decided it was time to ask them. This post will provide an overview of the findings and future blogs will focus on other findings regarding coinfection rates, rashes, disability, symptoms and other topics. The study was a joint effort of LymeDisease.Org and Prof. Jennifer Mankoff at Carnegie Mellon University.
Chronic Lyme disease is associated with a poorer quality of life than most other chronic illnesses, according to a newly published comprehensive patient survey. Patients with chronic Lyme disease have high disability and unemployment rates and, compared to the general population, are five times more likely to visit healthcare providers and twice as likely to be seen in emergency rooms.
The CDC estimates that more than 300,000 people contract Lyme disease every year in the United States. Approximately, 36% of patients diagnosed and treated early remain ill after a short-term course of antibiotics. The survey used standard questions developed by the CDC regarding health related quality of life.
The study 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. Fair or poor health was reported by 73% of patients with chronic Lyme disease. In comparison, only 16% of those in the general population report fair or poor health.
The survey also shows that patients with chronic Lyme disease have high disability and unemployment rates. Over forty percent of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% of patients report that they have received disability at some point in their illness. This compares with 6% of the US population who are unable to work due to illness.
Most patients report three or more symptoms as severe or very severe. The most common severe symptoms include fatigue (48%), sleep impairment (41%), joint pain (39%), muscle aches (36%), and other pain (34%). Physical or mental health problems limit Lyme patient functioning on 19 days each month compared to only two days per month for the general population.
Chronic Lyme patients also use healthcare services more often. They are five times more likely to visit healthcare providers and twice as likely to be seen in emergency rooms as the general population.
In a nutshell, 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.
Future blogs posts will focus on the rate of co-infections, symptoms, presence of rash, basis for diagnosis and other significant findings of the study.
The full article is available open access–meaning you can read it for free. Johnson, L., Wilcox, S., Mankoff, J. and Stricker, RB (2014) Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey. PeerJ, DOI 10.7717/peerj.322.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Executive Director of LymeDisease.org. Contact her at firstname.lastname@example.org. On Twitter, follow me @lymepolicywonk.