Health Care and Educational Psychology:

Lyme Disease Education

Poster presented at the 1997 Northeastern Educational Research Association Annual Conference, Ellenville, NY.

Bethany Silver1, Kimberly Lawless2, Scott W. Brown1, and Matthew Cartter3

1 University of Connecticut, 2 Utah State University, 3 Connecticut Department of Public Health

Community Assessment and Educational Psychology Interventions:

Lyme Disease Prevention

In the United States, Lyme disease was first identified in the towns of Lyme and Old Lyme, Connecticut (Steere, Malawista, & Snyderman, 1977). The national surveillance for Lyme disease was established by the United States Centers for Disease Control and Prevention (CDC) in 1982. Since then, the number of reported cases has increased from 497 cases in 1982 to 13,083 cases in 1994 (CDC, 1995). Lyme disease is now the most common tick borne illness in the United States (Dennis, 1991), while other tick related illnesses continue to surface. Instances of Lyme disease have been reported across the country; from high prevalence in Massachusetts through Maryland in the Northeast, to sporadic appearances in Wisconsin and Minnesota in the Midwest, and in California and Oregon in the West (Steere, 1989).

Ecological changes combined with changes in demographic patterns have brought increasing numbers of people into contact with the tick species (Iodes Scapularis and I. Pacificius) that transmit Lyme disease. Control efforts aimed at reducing the tick population, such as pesticides, have shown some promise, however, they remain problematic and often must be implemented in a large scale, cooperative programs that are beyond the scope of the individuals that are at risk. Thus, it is imperative that immediate control efforts for this disease rely on educating the public on the importance of avoiding tick bites and treatment of the disease, once an individual has become infected.

School aged children are at particular risk for contracting Lyme disease. They engage in many of the high risk behaviors associated with infection, including playing in grassy areas as well as hiking and camping in wooded areas. Studies investigating changes in attitude and behaviors concerning health issues have noted difficulty associated with establishing and maintaining prevention behaviors in children, especially adolescents (Eisen & Zellman, 1984; Franz, 1987; Lewis, 1991).

During the past five years, with consistent support from the CDC, we have focused on educating school aged children as well as adult community members regarding issues of Lyme disease prevention. These efforts have included knowledge, attitude and behavior assessments of high school freshmen and sophomores in highly endemic areas; creation and distribution of two videos, one being an 18 minute video (Curse of the Blood Suckers) sent to over 1000 high schools and aired on Life Time television in 1993, the second video was designed for elementary aged children (Tick Invaders); and lastly, community focus groups targeting concerns about Lyme disease and the enhancement of related knowledge, attitudes and behaviors.

A Recent Survey Regarding Lyme Disease

In our sixth year of research, we sought to examine the incidence rate of Lyme disease diagnosis East and West of the Connecticut River and to explore willingness to pay for and vaccinate against Lyme disease. A stratified random sample was drawn from the 12 town area surrounding Lyme Connecticut, where the rate of Lyme disease infection is known to be high. The number of respondents from each town was set according to overall proportion of population. Information was collected from 1006 respondents via a telephone survey (with a 95% return rate). The overall incidence rate of Lyme disease in our sample of 1006 households showed that 29.4% (n=296) indicated that at least one member of the household had contracted Lyme disease.

To evaluate community awareness of Lyme disease prevalence, respondents were asked, "Do you believe that you and your household members are at low, moderate, or high risk of getting Lyme disease?". Twenty-five percent of respondents believed they were at low risk, 32.2% selected moderate levels of risk and 38.5% chose the high risk category. These responses closely parallel the incidence rate of our sample.

The survey had two versions relating to questions regarding vaccine effectiveness rate. Participants were asked about the likelihood to vaccinate against Lyme disease. Half of the surveys reflected a 90% effectiveness rate for the yearly vaccination, the remaining half indicated a 70% effectiveness rate. This was done to assess the consequences of a lower effectiveness rate of a Lyme disease vaccine. Participants were asked, "Suppose that a vaccine for Lyme disease was available and was 90% (70%) effective in preventing Lyme disease. Would you consider getting a yearly vaccination for yourself and other people in your household?". Significant Chi Square differences between effectiveness rates and likelihood to vaccinate were found (Chi Square=6.587, df=1, p<.02). Fewer than expected at the 90% effectiveness rate indicated responses of No, while more than expected in the 70% effective group indicated Yes, they would be likely to obtain a yearly vaccine against Lyme disease.

The majority of survey respondents were willing to vaccinate (n=718). The overall receptivity to vaccination bodes very well for a major preventative measure in combating Lyme disease. Our concern then centers on those unwilling to receive a vaccination. Respondents who indicated a reluctance to vaccinate (n=153) were asked, "What is the main reason you would not be willing to have yourself or other people living in your household vaccinated for Lyme disease?". The response most often selected by participants (35.7%) was that the risk of Lyme disease does not justify the need for vaccine. When examined independently, of the persons choosing this response as the main reason for not vaccinating against the disease, 71.4% (n=70) had also indicated that they and their household members were at a low risk for contracting Lyme disease, and 20 participants (20.4%) had selected moderate as the risk level to self and household members. Our educational intervention is clearly directed by these results. Our current work, aided by the CDC, is aimed at raising the awareness of risk associated with Lyme disease.

The cost of vaccination was also a focus of investigation. Our intent was to determine the impact of pricing on willingness to pay for vaccination. The sample was randomly divided by a dollar amount respondents would be willing to pay for a yearly vaccine. Respondents were asked, "Would you be willing to pay $100($50) for each member of your household every year?" Half of the surveys suggested a cost of $50, while the other half offered a cost of $100. Examining dollar amount groups, significant differences were found with regard to willingness to pay for yearly vaccinations (Chi Square=40.79, df=1, p<.01). Fewer respondents in the $100 group than expected would pay this amount for the vaccine, and a greater number than expected in the $50 group indicated they would pay for the yearly vaccine. The educational implications for these results directed our efforts in developing a list of resources to assist persons in highly endemic areas with the cost of vaccination against Lyme disease.

Serving a Wider Community: The World Wide Web

Entering our seventh year of funding, the University of Connecticut research team on Lyme Disease Education continues to work in conjunction with the CDC to develop and disseminate educational materials related to Lyme disease. For the past six years, the focus of our efforts has succeeded in increasing knowledge about the disease for the general public; altering attitudes regarding risk; and increasing preventative behaviors (Brown, Lawless, & Cartter, 1995). Educational materials developed in accordance with the Gagne, Briggs and Wager (1992) design approach, in combination with situated learning, have included a curriculum for both elementary and high school students, as well as two instructional videos. With the development of numerous educational resources, a natural outcropping of this project was the creation and maintenance of a world wide web site.

A World Wide Web site focusing on Lyme disease Education (WWWLDE) was developed (http://www.ucc.uconn.edu/~wwwlyme) and went on-line in November of 1996. The initial home page was fairly simple. It provided links to general Lyme disease information. This consisted of the Centers for Disease Control and Prevention's Informational Brochure. Under the heading of Instructional Materials for Teachers there were three items that were soon to be available for downloading: HyperLyme, curricular materials for high school students, and curricular materials for elementary school students. HyperLyme had been developed in previous years' work, as had the curricular materials.

In March of 1997 the main pages were updated according to the standards set forth in the Yale Center for Advanced Instructional Media Manual (http://info. med.yale.edu/caim/stylemanual/manual-1.html). Changes were made to facilitate navigation, and instructional design issues were critically evaluated. Frames were added to better segment the content, more readily directing visitors to the resources they sought. Message delivery was altered to reflect current research (http://www.pantone.com), and funding sources for the project was made readily visible. A discrete counter was installed to keep track of how frequently the site was accessed (see Appendix C). Since March of 1997, there have been nearly 3000 visitors. In May of 1997 the site was listed with the major internet search engines (i.e. Excite, Lycos, Yahoo). This increased traffic to the site dramatically. As components have been added, these individual addresses have also been submitted to the large internet search engines under appropriate descriptors.

Currently, the WWWLDE site offers three main sections replete with resources and links to other reviewed sites and sources. Linkage and resource sites are selected based on the quality of content offered to visitors. An internet search using the key words "Lyme disease" results in over 383,000 occurrences of the term. Links to various sites are placed in one of two sections within the WWWLDE pages, based on the nature of the linking site's content. General information links reside in the first section of the WWWLDE, and clinical information links are located in the third portion of the WWWLDE, entitled Research Related to Lyme Disease.

The first component covers general Lyme disease information. There are seven links to excellent resources relating to Lyme disease where discussion is presented in a non-clinical manner. Visitors, whose internet time may be running on a per-minute fee basis, are provided with a brief description of each site to assist in the decision making process.

The second component of the WWWLDE consists of instructional materials for teachers. Two versions of HyperLyme, created in 1995 and designed to educate children and adults about Lyme disease, are available for download in self-extracting stacks. This is an interactive, computerized text with supplementary graphics. Both run in a Macintosh environment. HyperLyme has also been recently formatted to run directly on the world wide web. Other foci on this page are two curricular pieces.

The first curricular materials provide a strong foundation for general knowledge regarding Lyme disease. This includes symptoms and treatment of Lyme disease, as well as information about behaviors to reduce the risk of infection. There is on-line instructional content, test items and student activities. The second curricular component is aimed at increasing knowledge about the biological aspects of the disease. Although the target audience consists of school children in highly endemic areas, such as the Lyme, Connecticut 12 town area, both curriculae are suitable for all school age children and are even appropriate for adult instruction. These pages, designed to inform attitudes, behaviors, and knowledge, can be visited and explored internationally, serving as a resource to anyone seeking general Lyme disease information.

The third and final component of the WWWLDE includes academic research, popular press links, and links to other reviewed sites. There are full-text research articles as well as links to clinically based Lyme disease information pages and resources.

Along with these components, each page offers the visitor a chance to email the site administrator with questions, suggestions or ideas for future development.

While the site provides a wealth of information to visitors, other than a general count, we were not gleaning any information about them. An on-line survey was developed based on the June 1996 survey and went online in October,1997. The inclusion of this component provides visitors with an opportunity to share their Lyme disease experience while at the same time generates a resource for Lyme disease research regarding this population. Responses have begun to accumulate and this method of information gathering looks promising.

References

Centers for Disease Control and Prevention, (1992). The Curse of the Blood Suckers, Instructional video available from the CDC.

Centers for Disease Control and Prevention, (1993). The Curse of the Blood Suckers, Instructional video available from the CDC.

Centers for Disease Control and Prevention, (1995). Lyme Disease - United States, 1994. Morbidity and Mortality Weekly,44(24): 459-462.

Dennis, D.T. (1991). Lyme disease: Tracking an epidemic. Journal of the American Medical Association, 266,(9), 1269-1270.

Eisen, M. & Zellman, G.L. (August, 1984). Health belief model-based changes in sexual knowledge, attitudes and behavior. Paper presented at the American Psychological Association Convention, Toronto, Canada.

Franz, W. (March,1987). Adolescent cognitive abilities and implications for sexual decision making. Paper presented at the Annual Eastern Symposium on Building Family Strengths, University Park, Pennsylvania.

Lewis, L.K. (October, 1991). A challenge for health education: The enactment problem and communication-related solution. Paper presented at the Annual Meeting of the Speech Communication Association, Atlanta, Georgia.

Steere, A.C., Malawista, S.E. & Snyderman, D. (1977). Lyme Arthritis: An epidemic of oligoarthriticular arthritis in children and adults in three Connecticut communities. Arthritis Rheum, 20, 7-17.

Steere, A.C. (1989). Lyme disease. New England Journal of Medicine, 321(9), 586-596.