Lyme disease prevalence study begins in Ravalli County

By Michael Howell

The South Valley Child and Family Center (SVCFC) in conjunction with the University of Montana is conducting a community-based participatory research project designed to accumulate data concerning the prevalence of Lyme disease (Lyme Borreliosis) in Ravalli County. The study is being conducted by Masters of Public Health graduate student Emilee Kottcamp-Allen and Dr. Blaise E. Favara with SVCFC.
According to Favara, there are patients in our area of Western Montana with a chronic and debilitating disorder like those reported as post-Lyme disease symptoms/syndrome. He and his co-investigator have spoken to 14 people so far and he says signs and symptoms are sufficiently alike between patients to suggest a single disorder.
“There is considerable confusion and uncertainty among healthcare providers and patients concerning diagnosis, course and treatment of Lyme disease,” said Favara. He said understanding of the disorder is especially poor locally since the vector tick is said not to be found in Montana and definitive diagnostic testing has been lacking.
This project will determine the prevalence and characteristics of the disorder in Ravalli County residents by promoting and facilitating self-reporting, through surveys of signs and symptoms and by review of other information at interview. Data obtained from the study will be compared with that reported in the medical literature. Diagnosis during hospitalization is rare, he said, and thus review of hospital records will not be undertaken. Although Lyme disease is a reportable disease, few cases have been reported to Montana authorities.
The process of recruiting participants will last one month.
There will be two project staff members responding to phone calls, e-mails and social media from interested subjects.
Candidates submitting information will be contacted by one of the investigators within five working days. Study packets will be mailed and/or placed so they can be picked up by candidates at convenient locations in the county. Candidates may call an investigator if help is needed in completing the questionnaire or if there are questions.
Returned study packets will be reviewed by investigators for completeness and responses to questionnaires evaluated and tabulated.
An investigator will contact participants to arrange a personal interview. Interviews will be scheduled for mutually convenient times (estimated to last up to two hours) and will be held at sites of convenience. Respondents will be asked to bring copies of laboratory tests and other study results if there are any.
What’s to be gained from the study?
“No direct benefit to participants is envisioned,” said Favara. “We will gain an awareness of the magnitude of the problem of Lyme disease in our community and make the information widely available. If results warrant, we hope to publish them in a reputable peer-reviewed medical journal. This insight should benefit healthcare providers, public health workers and patients.”
Favara said that it was very important to minimize the risk of participants being misled by, and/or disappointed with, the study.
“We want to be honest and clear about what the study is and what it is not,” he said.
He said the study is simply designed to determine how many residents of Ravalli County have had or have Lyme disease as the patient senses it and to establish self-reported minimal prevalence of Lyme disease in the study population. He said a record will be made of the list of signs and symptoms that the respondents have had or currently have.
Then a determination will be made of how many participants in the study have or have had the signs, symptoms and laboratory profile that is recognized by the “medical community” in 2015 as “diagnostic” for Lyme disease. Laboratory testing is not part of the project, but some may request it.
“We will facilitate testing in concert with an individual’s healthcare provider if requested to do so,” said Favara. “We are aware of the flaws and serious controversy in this area and have no intention of joining in or fueling it.”
He said the study will follow HIPPA regulations and ethical principles and be completely “transparent” and will, hopefully, yield results that may be publishable.
The study is not designed to: 1) focus on any problems patients may have encountered in their healthcare; 2) modify a patient’s preferred treatment, influence future treatment or comment on present or past treatments; 3) attack anyone directly or indirectly; 4) advocate for any specific treatment philosophy or healthcare provider; 5) lead anyone to believe that the investigators have or know of a cure for Lyme disease or a means of significantly reducing symptoms.
Anyone wanting further information or wanting to participate in the study may contact either Emilee Kottcamp-Allen, MPH or Blaise E. Favara, MD by calling 406-361-8064 or emailing Blaise.favara@gmail.com or going to LymeRavalliCounty on facebook.com/groups/.