Evaluating responses to Lyme disease in Massachusetts


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With Lyme disease posing a growing threat to public health in Massachusetts, the state has investigated how well its physicians and residents are responding to the disease. A comprehensive study conducted by JSI Research & Training Institute for the Massachusetts Department of Public Health (MDPH) points to major gaps in what the public knows about the infectious disease and to a wide variation in how physicians handle treatment and reporting related to it.

The study found that a lack of public awareness and knowledge of Lyme disease "increases anxiety" and "reduces preventive behavior"—factors that likely contribute to the growing prevalence of the disease, possible overuse of antibiotics and an increased burden on the health care system.

A 64-page report completed by JSI in 2008 recommends a series of initiatives to heighten public awareness and knowledge of Lyme disease and help physicians deal more effectively with it.

The spread of Lyme disease is a mostly seasonal phenomenon that is rare in the winter and reemerges in the spring. Risk persists throughout the summer and fall. In recent years the incidence of the disease has been rising both in Massachusetts and nationwide. In 2005, Massachusetts ranked fourth nationwide among the states with 2,341 reported cases, a number that has continued to increase annually. There were 3,376 cases of Lyme disease reported in Massachusetts in 2007.

The study, which JSI developed along with the Massachusetts Bureau of Infectious Disease Prevention, Response and Services, included research with focus groups of consumers, a survey of 273 primary care physicians and in-depth interviews with 17 physicians, consumer advocates or local public health officials.

It was one of the most extensive such studies undertaken to evaluate a state's preparedness in responding to the rising incidence of Lyme disease, says Alec McKinney, co-director of the JSI project. "We found that only relatively little research had been conducted to assess how physicians and other providers screen and treat Lyme disease or to evaluate how knowledge among the general population translates into prevention," McKinney says. "We undertook the study along with MDPH to fill those gaps."

Based on the focus-group research, the study noted that many Massachusetts residents have a "good grasp" of Lyme disease-related symptoms and preventive measures. There was greater awareness particularly on Cape Cod and other parts of the state where the disease was most prevalent. However, some focus-group members, particularly from areas where incidence was relatively low in the state, "knew very little."

Several areas in which the gaps in knowledge appeared large were identified. One seemingly widespread misperception was that any type of tick potentially transmits Lyme disease. Because only the deer tick can transmit the disease, the mistaken belief could lead to increased demands for treatment after exposures to ticks that do not carry the infection.

The report concludes that maximizing public awareness of the disease could be best achieved with a multi-faceted, geographically-targeted media and outreach campaign—encompassing television, newspapers, the Internet and face-to-face community meetings. A priority, the report goes on, should be the face-to-face training about Lyme disease for key community figures, such as teachers and camp counselors, who are most likely to be in contact with those most at risk of contracting the disease.

Among the study's main findings from the survey of physicians:

  •  Most respondents, but not all, were knowledgeable and confident in their ability to diagnose and treat Lyme disease and provide appropriate education.
  • Many of those surveyed were not aware of the circumstances in which testing for the disease is recommended.
  • Even where a patient is asymptomatic and there is no indication of a tick bite, 39% of the respondents said they sometimes prescribe an antibiotic—contrary to what prevailing guidelines specify in those circumstances.
To increase physicians' knowledge of Lyme disease and its treatment, the report recommends that the expansion of existing educational programs and the development of either a face-to-face or Internet-based curriculum for physicians. "A key partner in MDPH's efforts to educate physicians could be the Massachusetts Medical Society," the report says, referring to the statewide association that represents physicians and medical students.

Regarding the reporting of Lyme disease cases, as state regulations require, the study finds a &great variation" in the extent to which physicians complied. Only 45.7 percent of those taking part in the survey said they always reported incidents of Lyme disease. One-third of the respondents said they had never reported their positive diagnosis of such cases. Among the reasons cited for noncompliance were the belief that labs testing for the disease were reporting positive results anyhow, a lack of knowledge about the state requirement, and the time-consuming paperwork involved.

Education about the reporting requirements and automating the reporting process via the Internet would ease the burden of compliance, according to many physicians surveyed. An online reporting system would "most likely" increase compliance, JSI's report concludes.