Lyme Patients Access to Care Survey Study
This study reports the results of an LDo survey of more than 2,400 patients with Lyme disease. It examines problems with access to healthcare and burden of illness, and it found that although patients with Lyme disease suffered a substantial burden of illness, they had significant barriers to healthcare access. Specifically, patients with Lyme disease had difficulty obtaining diagnosis and treatment for their illness, traveled great distances to receive healthcare, were turned down for health insurance based on their illness, and had difficulty receiving care at local hospitals. More details are reported in a LymePolicyWonk blog. The study was published in a highly regarded peer review journal and should be cited as:
Healthcare access and burden of care for patients with Lyme disease: A large United States survey.
Below is an abstract of this study with a link to the full journal publication.
Objective. To evaluate the challenges faced by Lyme disease patients in obtaining adequate healthcare.
Methods. A web-based survey conducted over nine months was analyzed for the study. The survey focused on medical status, access to healthcare, and burden of illness. For inclusion in the study, survey respondents had to reside in the United States, be more than 10 years old, and have clinically diagnosed Lyme disease with chronic symptoms and positive laboratory testing.
Results. Responses from 2424 patients were included in the study. Half of the respondents reported seeing at least seven physicians before the diagnosis of Lyme disease was made. Nearly half had Lyme disease for more than 10 years and traveled over 50 miles to obtain treatment. Most respondents experienced symptoms lasting six months or more despite receiving at least 21 days of antibiotic treatment. A quarter of respondents had been on public support or received disability benefits due to Lyme disease symptoms, and over half had visited an emergency room at least once as a result of these symptoms.
Conclusions. Lyme disease patients frequently endure extensive delays in obtaining an initial diagnosis, have poor access to healthcare and suffer a severe burden of illness.