Correspondence

Underreporting of Lyme Disease

N Engl J Med 1998; 338:1629May 28, 1998

Article

To the Editor:

Lyme disease, the most common vector-borne disease in the United States, became a nationally notifiable disease in 1991. From 1982 to 1996, a total of 89,169 cases were reported to the Centers for Disease Control and Prevention (CDC).1 In 1994, 1995, and 1996, record numbers of cases (13,043, 11,700, and 16,461 cases, respectively) were reported, predominantly in the Northeast. There is concern that the actual number of cases is much higher, because of considerable underreporting in the current passive surveillance system. For other notifiable diseases, only 5 to 60 percent of cases are actually reported.2,3

The Connecticut Department of Health Services found that of the physicians in internal medicine, general or family practice, pediatrics, and dermatology, who reported 82 percent of the 2952 cases of Lyme disease in 1991–1992, only 7 percent actually reported on the disease during this period.4 Thus, most physicians in Connecticut had either not diagnosed cases of Lyme disease at that time or were underreporting them. A subsequent study concluded that at most 16 percent and as little as 11 percent of Lyme disease cases were reported in 1992.2

In New York's Dutchess County, the reported cases of Lyme disease nearly doubled (918 cases in 1995 vs. 1832 in 1996), perhaps because a local vaccine trial during that time heightened public awareness of the disease. By contrast, the number of cases remained stable in all other New York counties. In New Jersey, six counties with active surveillance reported higher rates than the remaining counties in 1995 and 1996 (three times as high in 1995 and twice as high in 1996), which was not the case in previous years before active surveillance had been instituted (Genese C: personal communication).

Connecticut has the highest incidence of Lyme disease and should have the highest public (and physician) awareness of the disease. It is therefore likely that underreporting is even more serious in states with a lower incidence. Assuming that the total number of cases is six to nine times the reported number, as exemplified by the Connecticut studies, then the total number of cases between 1982 and 1996 might have to be revised upward, from 89,169 cases to 535,014 or 802,521 cases. Estimates would of course have to be revised downward if reporting of Lyme disease has improved since 1992.

If the number of reported cases is artificially low, then it is unlikely that a more aggressive and appropriate public policy against Lyme disease would be adopted. I suggest that the health departments of the various states in which the disease is endemic, together with the CDC, determine the level of underreporting of this disease. The active surveillance system initiated in New Jersey should probably be expanded to other areas of endemic disease as well. Better physician education about the criteria for diagnosis of Lyme disease established by the CDC and the requirements for reporting it also appears to be warranted. Misdiagnosis not only leads to underreporting of new cases, but also may lead at times to overdiagnosis, since Lyme disease has almost become a euphemism for chronic cases of pain and fatigue syndromes.5

John D. Young, M.D., Ph.D.
Rockefeller University, New York, NY 10021

5 References

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   Lyme disease -- United States, 1996. MMWR Morb Mortal Wkly Rep 1997;46:531-535
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   Meek JI, Roberts CL, Smith EV Jr, Cartter ML. Underreporting of Lyme disease by Connecticut physicians. J Public Health Manag Pract 1996;2:61-65
   Medline

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   Marier R. The reporting of communicable diseases. Am J Epidemiol 1977;105:587-590
   Web of Science | Medline

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   Physician reporting of Lyme disease -- Connecticut, 1991-1992MMWR Morb Mortal Wkly Rep 1993;42:348-350
   Medline

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   Steere AC, Taylor E, McHugh GL, Logigian EL. The overdiagnosis of Lyme disease. JAMA 1993;269:1812-1816
   CrossRef | Web of Science | Medline

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   Stephen G. Jones, William Conner, Bo Song, David Gordon, Anand Jayakaran. (2012) Comparing spatio-temporal clusters of arthropod-borne infections using administrative medical claims and state reported surveillance data. Spatial and Spatio-temporal Epidemiology
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   Shannon L. LaDeau, Gregory E. Glass, N. Thompson Hobbs, Andrew Latimer, Richard S. Ostfeld. (2011) Data–model fusion to better understand emerging pathogens and improve infectious disease forecasting. Ecological Applications 21:5, 1443-1460
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   Klaus-Peter Hunfeld, Peter Kraiczy, Elena Kekoukh, Volker Schäfer, Volker Brade. (2002) Standardised in vitro susceptibility testing of Borrelia burgdorferi against well-known and newly developed antimicrobial agents — Possible implications for new therapeutic approaches to Lyme disease. International Journal of Medical Microbiology 291, 125-137
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   Gregory A. Poland, Robert M. Jacobson. (2001) The prevention of Lyme disease with vaccine. Vaccine 19:17-19, 2303-2308
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   Janine Evans. (1999) Lyme disease. Current Opinion in Rheumatology 11:4, 281-288
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   Wendy T Thanassi, Robert T Schoen. (1999) Successful vaccination for Lyme disease:a novel mechanism. Expert Opinion on Investigational Drugs 8:1, 29-35
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