Background
Methods
Focus group data collection and analysis
Survey data collection and analysis
Results
Respondent demographics
Small-town | Academic Medical Center | |||||
---|---|---|---|---|---|---|
Physician (n = 3) | Physician assistant (n = 2) | Nurse practitioner (n = 1) | Physician (n = 14) | Physician assistant (n = 2) | Nurse practitioner (n = 2) | |
Specialty | ||||||
Family medicine | 2 | 1 | 1 | – | – | – |
Emergency medicine | 1 | 1 | – | 10 | 1 | 1 |
Internal medicine | – | – | – | 2 | 1 | 1 |
Pediatric medicine | – | – | – | 2 | – | – |
Practice location | ||||||
Hospital | 1 | – | – | 14 | 2 | 2 |
Urgent care | 2 | 1 | 1 | – | – | – |
Private practice | – | 1 | – | – | – | – |
Years in practice | ||||||
Less than 1 | – | – | 1 | 3 | – | – |
1–5 | – | 2 | – | 4 | 1 | 1 |
5–10 | 2 | – | – | 2 | 1 | 1 |
10 or more | 1 | – | – | 5 | – | – |
Focus group findings
Theme | Explanatory subtheme | Exemplary quote |
---|---|---|
Difficulty in diagnosis | Differential diagnoses are complicated by nonspecific symptoms and interpretation of laboratory results | "…the Lyme test maybe came up with two bands or something like that, three bands, but not enough to confirm that this is Lyme. Like, what do you do? Do you treat the fatigue? Do not treat the fatigue? Everything else is normal." [FG3] |
Clinicians have a self-professed lack of awareness of TBDs outside of Lyme disease | "…I think probably the non-Lyme tick-borne illnesses, which aren’t as readily prevalent, probably aren’t thought of as much as they probably should be." [FG2] | |
Lack of standardized diagnosis and treatment practice patterns across specialties | "….we’ve had a number of patients present with effusions to the emergency room and before anybody thinks of Lyme disease, they get their joints tapped." [FG3] “Everybody seems to do it a little bit differently. You get, ‘Well, my other son had it four months ago and that doctor did it this way, and now you’re telling me that way.’”[FG3] | |
Presence of EM rash is a key diagnostic feature for frontline providers | "If there’s a bull’s eye rash…we are very clear [in] what we need to do.” [FG3] “If I have somebody come with a bull’s eye, I don’t order a Lyme titer. I just treat them. I think most people would do that anyway.”[FG3] | |
Challenges presented by patients and misinformation | Educating patients can be more difficult when patients have existing relationships with outside providers | "They have something like chronic fatigue and…they will end up going to one of these…Lyme experts that all they do all day long is put people on something unusual, very strange therapy….And I never know what to do." [FG3] |
Patients often challenge the diagnostic process and recommended treatment plan presented by their provider | "I think patients don’t understand, in a basic way, the uncertainty… there’s uncertainty at every step. They expect black and white answers, and it just isn’t." [FG2] | |
Some patients self-diagnose and identify with chronic Lyme disease when experiencing non-specific symptoms | "…some people that come identify with the diagnosis, and you can’t pry them loose." [FG2] | |
Resources and support to improve diagnosis and treatment of patients | Existing resources do not meet patient accessibility needs | "…the patient population I was working with had a very low literacy level. So, we were looking at a reading level of grade school. It was hard to find resources that were anywhere near approachable for them." [FG1] |
Resources are needed for educating skeptical patients | "A lot of patients have fear of missing it and it becoming debilitating. A lot of that is based on they know someone who has chronic Lyme. So just some factual information about, does chronic Lyme exist? You know, something to provide to the patient." [FG1] | |
Access to infectious disease specialists for patient consults and recommendations is helpful | "…If I'm getting a lot of pushback or I'm just not sure, you know, it's just confusing for me, I may have sent a couple of people to [ID doctor] just because he is the ID expert." [FG3] | |
Point-of-care, updated reference material is essential | "One of the problems with UpToDate is if you want to click on a photo, all you get is one photo…I mean, you can go on Google and check images and pick up all kinds of stuff, but it will include people with, like stuff that’s not particularly helpful." [FG2] "I mean, again, when you pull them up, you often see 2014, 2015. You know, I like to look and see how recent it is."[FG3] | |
Continuing education and clinician proficiency | Clinicians need more resources on treatment modalities for different populations | "One dose of doxy[cycline] might be a good prophylaxis, but one dose of amoxicillin isn’t. But people that don’t know ped[iatric]s very well assume, well, if we have to use amoxicillin then we will just do that one dose of amoxicillin. But you can’t do that." [FG3] |
Current training program formats are not conducive to healthcare provider education | "I don’t think just inviting us to a random webinar –we get invited every two days to some drug or some whatever in emails, and I just keep deleting them." [FG3] | |
Local epidemiological data and information about tick vectors can directly inform diagnosis and treatment | "I did this tick panel and she came in two weeks later, she had anaplasmosis. But, that was like, whoa. Where did that come from? But, knowing what’s in the community is very useful." [FG2] | |
There is a consistent need for education on TBD basics, covering presentation, diagnosis, and treatment | "I mean, most providers have some basic knowledge and don’t have to go back to square one, but there's new information all the time." [FG3] |
Theme 1: Difficulty in diagnosis
“The most annoying one, for me, is the Lyme…part of the differential, but not high on the list, and what do I do about it? So, I’ve got a fever and a little bit of a cough, and my aches, my joints hurt, um, and I live in [endemic area]...So that’s, that actually, it’s frustrating.” [FG1, Family Medicine]“That’s where I have the hardest time deciphering...when we know in the literature they keep telling us this is a clinical disease, well, here’s a clinical symptom. But, is this Lyme or is it not?” [FG3, Pediatrics]
"I'll have people come in for a follow up or from seeing like urgent care... and they've put them on one dose of amoxicillin. And I'm like... the literature doesn't show that amoxicillin can be used preventively, you know...Especially I think it's urgent care."[FG3, Pediatrics]
Theme 2: Challenges presented by patients and misinformation
“I think when people have bad data, that’s particularly hard because no matter what I say, they’re going to be like ‘You’re not Lyme literate. I have other sources.’” [FG1, Family Medicine]
“The toughest one I ever had was a young kid who came in with his parents, just for a general checkup, but they mentioned his past history of Lyme disease and how he was being treated at a clinic...for chronic Lyme disease with sequential courses of multiple intravenous antibiotics over and over and over again. And I was just sitting there biting my tongue the whole time. And his complaints were fatigue.[chuckle/sigh]” [FG2, Internal Medicine]
Theme 3: Resources and support to improve diagnosis and treatment of patients
Theme 4: Continuing education and clinical proficiency
“To have someone be able to answer questions online while you’re watching the presentation because often there are a lot of questions, which don’t have the time to get answered…A little bit more case studies...because that’s what a lot of the primary care doctors are facing.” [FG1, Family Medicine]
"I ordered what I thought was sort of the standard Lyme titer. It came back negative and this kid continued to have a swollen knee...He went to the orthopedist. They couldn't figure it out. He's going up to the rheumatologist. And it's just because I ordered the wrong test...I think [I] ordered the PCR, which was like, you know, the quick and easy one. But actually that wasn't probably a good one to do." [FG3, Pediatrics]
Survey findings
Self-reported knowledge on clinical management of TBD | Correct TBD treatment selecteda | |||
---|---|---|---|---|
Not at all knowledgeable | Moderately knowledgeable | Extremely knowledgeable | ||
Anaplasmosis | 11 (45.8%) | 12 (50.0%) | 1 (4.2%) | 20 (83.3%) |
Babesiosis | 9 (37.5%) | 15 (62.5%) | 0 (0.0%) | 12 (50.0%) |
Lyme Disease | 0 (0.0%) | 13 (54.2%) | 11 (45.8%) | 24 (100%) EM rash |
16 (66.7%) Negative serologyb | ||||
18 (75.0%) Positive serologyb |