Understanding the Perspectives, Experiences, Beliefs, and Knowledge of Health Care Practitioners on the Diagnosis and Treatment of Lyme Disease in Canada

Abstract

Background:

Lyme disease (LD) is a multisystemic disease without a current approved human vaccine. Increasing infection rates have created pressure to improve the diagnosis and treatment of LD in Canada. This study aims to inform LD care through the exploration of health care practitioner (HCP) perspectives, experiences, beliefs, and knowledge of LD diagnosis and treatment.

Methods:

Canadian HCPs took part in bilingual (English and French) semi-structured interviews to explore their experiences and perspectives related to LD diagnosis and treatment. Major themes within and between participants were identified using inductive thematic analysis and axial coding.

Results:

A total of 43 HCPs working in LD-related fields participated in this study. Four major themes were identified; HCPs have: 1) Similar perspectives regarding antibiotic use, regional influences, and physician referral; 2) diverse perspectives on the use of serology testing and barriers for LD diagnosis and treatment between endemic and nonendemic regions; 3) challenges and disagreement toward diagnosing and treating chronic LD; and 4) trust in one (among several) LD guidelines, yet consult a variety of secondary sources for additional LD knowledge.

Discussion:

The findings reveal a pressing need for greater consistency among HCPs regarding the diagnosis and treatment of LD in Canada. Variation can be attributed to diverse beliefs, perspectives, and approaches within LD practitioners generally, but is particularly evident when addressing, acknowledging, and defining chronic LD.

Lyme disease (LD) is an illness that affects multiple systems within the body without a current vaccine for humans. With rising cases of LD in Canada, there is a growing urgency to enhance how the disease is diagnosed and treated. This study explores Canadian health care practitioners’ (HCPs') perspectives on diagnosing and treating LD through in-depth interviews with practitioners in LD-related fields. Key findings from 43 interviews revealed that health care practitioners have: consensus on antibiotic use and geographical factors, differing opinions on blood tests (serology), debate and difficulty with chronic LD management, confidence in existing LD guidelines, and the use of a variety of sources for secondary knowledge on LD diagnosis and treatment. This study highlights the need for more unified practices among health care professionals in diagnosing and treating LD in Canada. The diversity in views and approaches, especially concerning chronic LD, points to the complexity of the disease and the necessity for more consistent and clear guidelines.

Introduction

Lyme disease (LD) is a multistage tick-borne disease resulting from various strains within the Borrelia burgdorferi sensu lato complex in North America and Europe, with lxodes scapularis and lxodes pacificus ticks being the primary vectors in North America (1). The global incidence of LD has increased over the past decade, and rates of new infections are expected to grow (2). In Canada the prevalence of LD varies, but reported cases have increased significantly, from 144 cases in 2009 to 3,147 cases in 2021 (3). Climate change contributes to the proliferation and survival of tick populations, thereby increasing the establishment of endemic areas in Canada (2). These endemic regions currently include Eastern Ontario, Southern Quebec, New Brunswick, Nova Scotia, Western British Columbia, and Northern Manitoba (3).

Health care practitioners (HCPs) such as family physicians, nurse practitioners, pediatricians, and emergency physicians are often the first to encounter suspected LD patients and are therefore the first line of defence in diagnosis and treatment (4,5). LD symptoms vary by stage and can mimic various conditions, complicating the standardization of its diagnosis and treatment. Unfortunately, HCPs have been found to lack sufficient knowledge, educational resources, and/or training to effectively engage in differential clinical diagnosis, interpreting laboratory and serology results, and treating LD (6–8).

HCPs face challenges in diagnosing and treating LD, in part due to conflicting advice about the role and usefulness of serology tests (9). The sensitivity of serological assays is notably lower in the early acute stages of LD, detecting only 29%–75% of LD cases (10, 11, 12), but diagnostic accuracy increases significantly for late disseminated LD, reaching 70%–100% (13,14). Decisions regarding the length and type of antibiotic treatment often rely on a combination of indicators that can vary widely (15–17). In fact, a recent review shows there are 115 resources with varying recommendations for diagnosing and treating LD (16).

The diagnosis of LD poses a challenge for HCPs, who must consider factors such as local infection rates, inconclusive early testing, and the heterogeneity of symptom profiles. In Canada, HCPs generally follow guidelines set out by the Infectious Disease Society of America (IDSA), supported by the Association of Medical Microbiology and Infectious Disease (AMMI) Canada (18,19). However, some HCPs also consider guidelines from the International Lyme and Associated Disease Society (ILADS) (15). Additional guidelines used by HCPs in Canada include (but are not limited to) those produced by the Institut national d'Excellence en Santé et en Services Sociaux (INESSS), the National Institute for Health and Care Excellence, public health organizations, provincial governments, academic institutions, and a myriad of other nonofficial organizations (20, 21, 22, 23, 24). The various conflicting guidelines for LD have contributed to and exacerbated controversies in LD management (7).

Purpose and objective

In Canada there have been significant challenges and disagreements between patients and HCPs regarding LD diagnosis and treatment (25). The primary purpose of this study is to explore HCPs’ experiences, beliefs, practices, and knowledge pertaining to the diagnosis and treatment of LD in Canada, including their diverse and sometimes conflicting approaches.

Methods

We adopted a constructivist paradigm using semi-structured interviews with Canadian HCPs who have (or have the potential to) diagnose(d) and treat(ed) LD. Throughout the study, we engaged in a continuous dialogue with patient partners, ensuring we integrated their insights and feedback into the study. This study was conducted with approval and ethical compliance from the Queen's University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board (approval no. #6029039).

Theoretical foundation

Our team used the Consolidated Framework for Implementation Research (CFIR) as a guiding structure for formulating bilingual (French and English) interview questions specifically designed to explore the crucial elements of LD diagnosis and treatment (Appendixes A and B) (26). Although the CIFR is typically used as an implementation science framework, it is also well-suited to structure inquiry into approaches to care in complex health care settings (27). The CFIR comprises five main domains: 1) intervention characteristics, 2) external influences (referred to as the outer setting, including policies, guidelines, professional colleges), 3) inner setting (encompassing peer influences and local contexts), 4) characteristics of individuals (involving personal beliefs and experiences), and 5) processes.

Participants and recruitment

We recruited HCPs that diagnose and treat LD (ie, family physicians, emergency physicians, nurse practitioners, infectious disease [ID] physicians, and non-ID specialists such as rheumatologists, cardiologists, and internal medicine physicians) through three strategies: patient nominations, purposeful sampling via internet searches and telephone calls, and snowball sampling. Among these recruitment strategies, 67 HCPs were initially contacted through patient nominations, resulting in two agreeing to participate. Additionally, 324 HCPs were approached using purposeful sampling, yielding 16 participants. The exact number of HCPs contacted via snowball sampling cannot be precisely identified. However, 35 HCPs were contacted through a distribution list within a national LD research and patient community network. Through snowball sampling, 25 participants agreed to participate. Using these three strategies, HCPs were invited to participate in a 30–90 min semi-structured interview. Interested HCPs received further details and scheduling information through email correspondence and were offered an honorarium of $100 for their contributions to this study. Participants received a letter of information and consent by email and gave verbal consent at the beginning of the interview. No participants were excluded during the recruitment process or dropped out of the study.

Data collection

Using the CFIR framework, we developed bilingual interview guides (Appendixes A and B) to explore HCP experiences, beliefs, practices, and knowledge related to the diagnosis and treatment of LD in Canada. Interviews were conducted between January 2022 and 2023 by an experienced interviewer (MR) using Zoom, a secure telecommunication platform (28). Online interviews allowed for greater national reach and practitioner availability (29,30). Upon receiving verbal consent from each participant, all interviews were audio recorded and transcribed verbatim. Theoretical and operational research notes were taken during and after the interview to ensure reflexivity regarding the interviewer's thought process, personal perspectives, potential biases, and actions.

Data analysis

We primarily adhered to the principals of inductive thematic analysis outlined by Braun and Clarke (31), with the exception that we integrated axial coded techniques, conducted inter-rater reliability checks, and applied reflexivity and memo-ing (32, 33, 34, 35). Axial coding was included in our data analysis to ensure that we identified major themes within and between identified participant strata.

Using NVivo 14 software (36), a constant comparative method was used by two experienced researchers (MR and RE) to categorize and compare the data and identify both similarities and differences across HCP disciplines (37). Once each transcript was coded in full by the primary researcher (MR), preliminary categories were developed by grouping similar codes together. When all codes had been organized into categories, the two researchers met five times to discuss the accuracy of the categories and to determine the primary themes from the data.

Two researchers coded all transcripts and achieved 86% agreement in initial reliability testing across six interviews, one from each HCP discipline. Inter-rater reliability followed the approach of Braun and Clarke (38), where the primary researcher compared each transcripts line by line to identify similarities and differences in coding. Once reliability was established, a code book was generated using NVivo 14 software (36). The primary researcher coded the remaining articles, with regular meetings between the two researchers to discuss interpretations emerging from practitioners’ unique regional and disciplinary perspectives. Memos were used to justify coding decisions to maintain reflexivity and consider researchers’ personal biases (32,34,39).

Results

Demographics

A total of 43 HCPs participated in the interviews for this study, with 33 interviews conducted in English and 10 in French. Table 1 provides a summary of HCP discipline and other relevant participant demographic information.

Table 1:

Participant demographics (N = 43)

Demographic	No. (%)
Health care profession
Family physician	20 (46.5)
Nurse practitioner	6 (14.0)
Emergency medicine physician	6 (14.0)
Infectious disease physician	7 (16.3)
Non-ID specialists (rheumatologists, cardiologists, and internal medicine physicians)	4 (9.3)
Career Stage
Early	9 (20.9)
Mid	18 (41.9)
Late	12 (27.9)
Unidentified	4 (9.3)
Province
Ontario	14 (32.6)
Alberta	4 (9.3)
Quebec	10 (23.3)
Nova Scotia	3 (7.0)
British Columbia	7 (16.3)
Newfoundland and Labrador	3 (7.0)
Manitoba	2 (4.7)
Setting
Urban	33 (76.7)
Rural	10 (23.3)

ID = Infectious disease

Findings

Four overarching themes emerged from our analysis. HCPs have:

• •Similar perspectives regarding antibiotic use, regional influences, and physician referral
• •Diverse perspectives on the use of serology testing and barriers for LD diagnosis and treatment between endemic and nonendemic regions
• •Challenges and disagreement toward diagnosing and treating chronic LD
• •Trust in one (among several) LD guidelines, yet consult a variety of secondary sources for additional LD knowledge

It is important to highlight that definitions pertaining to LD were not provided to participants prior to the interviews. Consequently, all terminology presented in these findings, such as “chronic LD”, section aligns with the language used by the participants themselves.

Theme 1: HCPs have similar perspectives regarding antibiotic use, regional influences, and physician referral

Theme 1 was identified through the analysis of three categories and six subcategories (Table 2). Across all regions, HCPs used patient history to consistently prescribe antibiotic-based treatment strategies for suspected LD patients and made referrals to specialist physicians when in doubt. Furthermore, acknowledging tick exposure and travel within endemic areas was indicated to be an integral part of treatment practices.

Table 2:

Theme 1—HCPs have similar perspectives regarding antibiotic use, regional influences, and physician referral

Categories of themes	Subcategories of themes	No. HCPs	Representative quotes
HCPs expressed similar approaches to prescribing antibiotics in both endemic and nonendemic regions	Use of oral doxycycline to treat LD	18 FP 5 NP 6 EP 5 ID 3 non-ID	“Then… if they have symptoms, you treat them with doxycycline.” (Participant 1, FP) “…if I do have a positive Borrelia burgdorferi antibody, but even before that, if I suspect [Lyme disease], I probably would start folks on the doxycycline treatment…” (Participant 14, NP)
	Use of oral doxycycline or intravenous ceftriaxone to treat LD in adults	4 ID 1 FP 1 EP	“I think that it's really either doxycycline or ceftriaxone intravenous, based on the symptoms of the patient. I don't have any other treatments that we use locally…” (Participant 26, EP) “…and then you would give them a course of antibiotics for that. So, there's a few different regimens that are available—ceftrioxime, doxycycline—depending on contraindications.” (Participant 39, ID)
	Use of oral doxycycline for adults or amoxicillin for children to treat LD	4 FP 3 NP 1 EP 1 ID	“Phase one [of Lyme disease symptoms] so, erythema migrans, 3–4 weeks after the tick bite, the infection. After the fever, the fatigue, the myalgias, headaches, those are fairly classic cases… [patients] respond very well to either amox[icillin] or doxycycline… So, [when the patient is] less than 8 years old is amoxyl, and more than 8 years old is doxy.” (Participant 43, FP)
Tick exposure and travel within an endemic area supports treatment and testing	HCPs indicated they will test for LD if patients had been to an endemic region or bitten by a tick	12 FP 6 ID 4 EP 3 NP 2 non-ID	“Just clarify if they've had any exposure to ticks for longer than 24 hours or if they've been in any endemic areas, that would put them at risk… of Lyme disease. If they've had a history… in an endemic area and their symptoms are suggestive [of Lyme disease], with or without a history of rash… then I would just order a Lyme serology through public health.” (Participant 15, FP)
	FPs, NPs, and EPs indicated they will provide prophylaxis if a tick is attached for more than 24 h	10 FP 5 NP 3 EP	“We see patients that have had tick involvement that is more than 24 hours, knowing the area is a [endemic region]… provide a prophylaxis medication…” (Participant 15, FP)
Specialist referral is important to support non-ID HCP disciplines for diagnosis and treatment	HCPs in nonendemic regions indicated they would refer to or consult ID Physicians for acute LD due to lack of knowledge or experience with acute and chronic LD	16 FP 4 NP 3 non-ID 2 EP	“I'm not sure that that family doctors by themselves would feel comfortable diagnosing and treating Lyme disease without seeking advice from subspecialty colleagues.” (Participant 9, FP) “Yeah, no, it'd be the same. I mean, for me… I might pick up the phone and talk to ID [Infectious Disease], perhaps, you know…” (Participate 40, non-ID)

EP = Emergency physician(s); FP = Family physician(s); HCP = Health care practitioner; ID = Infectious disease physician(s); LD = Lyme disease; non-ID = Non-infectious disease specialist physician(s); NP = Nurse practitioners(s)

Category 1: HCPs expressed similar approaches to prescribing antibiotics in both endemic and nonendemic regions

Category 1 was developed from three subcategories: 1) Use of oral doxycycline to treat LD; 2) use of oral doxycycline or intravenous ceftriaxone to treat LD in adults; and 3) use of oral doxycycline for adults or amoxicillin for children to treat LD (Table 2). HCPs exhibited homogeneity in their overall approach to treatment when patients tested positive for LD through serology testing or when clinical suspicion was high. While doxycycline and amoxicillin were the most prescribed antibiotics for LD treatment by all HCP disciplines, one family physician, one emergency physician, and four ID physicians also prescribed intravenous treatment based on patient symptoms (ie, type of symptom or long-lasting symptoms).

Category 2: Tick exposure and travel within an endemic area supports treatment and testing

Category 2 was identified from two subcategories: 1) HCPs indicated they will test for LD if patients had been to an endemic region or bitten by a tick; and 2) family physicians, nurse practitioners, and emergency physicians indicated they will provide prophylaxis if a tick is attached for more than 24 h (Table 2). This reflects a consistent strategy used to identify and treat potential cases of LD through patient history reporting. Of the HCPs who identified patient history as of primary importance to establish a clinical differential diagnosis before treating LD, 15 were from endemic regions and 12 were from nonendemic regions. If LD was suspected, HCPs in endemic regions primarily focused their discussions with patients on their possible exposure to local ticks, while HCPs in nonendemic regions focused on patient travel history to identify if they had recently been to an endemic region. Family physicians, nurse practitioners, and emergency physicians in both endemic and nonendemic regions said they were more likely to provide prophylaxis treatment if a tick was attached for more than 24 h.

Category 3: Specialist referral is important to support non-ID HCP disciplines for diagnosis and treatment

HCPs in nonendemic regions indicated they would refer to or consult ID physicians for acute LD due to a lack of knowledge or experience with acute and chronic LD (Table 2). Of the family physicians and nurse practitioners who were most likely to refer to, or collaborate with ID physicians, a lack of knowledge and experience in diagnosing and treating LD were more frequently reported by HCPs who practised in a low-endemic region (ie, British Columbia, Newfoundland, and Alberta). Other HCPs (ie, one family physician, nurse practitioner, and emergency physician) also discussed referring to and collaborating with ID physicians because they either lacked significant clinical experience in diagnosing or treating LD or encountered unique patient symptoms.

Theme 2: HCPs have diverse perspectives on the use of serology testing and barriers for LD diagnosis and treatment between endemic and nonendemic regions

Theme 2 was identified through the analysis of two categories and eight subcategories (Table 3). Most HCPs highlighted different and conflicting practices for diagnosing and treating LD. For example, diagnoses and treatments were perceived by most HCPs to be further complicated when patients travelled to the United States for testing and/or treatment. These HCPs indicated that patients who travelled to the United States received unreliable testing and unorthodox treatment practices, leading to inconsistent practices among HCPs across Canada when diagnosing and treating LD.

Table 3:

Theme 2—HCPs have diverse perspectives on the use of serology testing and barriers for LD

Categories of themes	Subcategories of themes	No. HCPs	Representative quotes
Heterogeneous approaches for decisions to order serology for LD diagnosis in endemic and nonendemic regions based on history of tick bite and patient symptoms	HCPs in endemic and nonendemic regions indicated they will order serology if patients were bitten by a tick, presented with a history suggestive of LD, or had LD symptoms	3 FP 1 NP 1 EP	“If a patient presents to me with a history that is suggestive of a possible Lyme disease exposure… like patients who come with a known tick bite [or] with [the] bull's eye, erythema migrans rash… [I would complete] clinical history and then I would do serology.” (Participant 12, FP)
	HCPs in endemic and nonendemic regions indicated they will order serology when the clinical diagnosis is not clear, or patients had nonspecific/vague symptoms regardless of tick bite	4 FP 3 EP 1 NP	“I can kind of recall… one or two patients that have come in and [said they have] been dealing with [symptoms] all summer. I think it might be Lyme disease, I'm not really sure… so in that situation, because [the patient symptoms are] so nonspecific, I would order off the serological testing.” (Participant 8, FP)
	HCPs in endemic regions indicated they will treat LD without ordering serology for acute presentations or symptoms of LD	2 FP 1 NP 1 EP 1 ID	“In fact… if we have a clinical diagnosis [of LD symptoms] which is very clear… [for example] the initial [patient] symptoms [are] deterioration of general condition with fever [and] erythema migrans, [then] we don't have the obligation of doing a serology.” (Participant 26, EP)
	HCPs in endemic and nonendemic regions indicated they will treat LD without ordering serology if erythema migrans rash is present	10 FP 4 ID 2 EP	“When you have erythema migrans, pftt we don't do a blood test.” (Participant 20, FP)
Barriers to LD diagnosis and treatment are multifaceted and often dependent on location and HCP discipline	HCPs indicated there is difficulty in deciding on serology tests for LD diagnosis without the patients being aware of tick bite or bringing in a physical tick to test	6 FP 1 NP	“In certain areas where it's endemic… it would have been nice if [the patient] brought the tick in. So, I suppose [not having a tick is] a barrier.” (Participant 1, FP)
	HCPs indicated they have unclear knowledge of how or when to use a serology test	5 FP 1 EP 1 NP	“It would be nice to have a bit more clarity [in LD diagnosis] and… when [to do] serology.” (Participant 30, EP)
	Patients disagree or do not understand practitioners’ approach to LD diagnosis and/or treatment for most disciplines of HCPs	3 FP 3 ID 2 non-ID 1 NP 1 EP	“There's almost a movement where [a lot] of patients think they have Lyme disease… If there [serology testing is] negative… [Patients] are very disappointed and angry when we tell them that they're negative [for] serology or negative [for] Lyme. They would like to have the diagnosis of Lyme because it gives them something physical to all their symptoms and when they don't get [the diagnosis] they get really angry.” (Participant 42, ID)
	HCPs indicated that serology is limited by long wait times for results for FP and non-ID	2 FP 2 non-ID	“The testing is probably the most serious [barrier], the delay. [Patients] would probably be quicker to go to the vet and just do your test right there…” (Participant 2, FP)

EP = Emergency physician(s); FP = Family physician(s); HCP = Health care practitioner; ID = Infectious disease physician(s); LD = Lyme disease; non-ID = Non-infectious disease specialist physician(s); NP = Nurse practitioners(s)

Category 1: Heterogeneous approaches for decision to order serology for LD diagnosis in endemic and nonendemic regions based on history of tick bite and patient symptoms

Category 1 was identified by four subcategories: HCP in 1) endemic and nonendemic regions indicated they will order serology if patients were bitten by tick, presented with a history suggestive of LD, or had LD symptoms; 2) endemic and nonendemic regions indicated they will order serology when the clinical diagnosis is not clear, or patients had nonspecific/vague symptoms regardless of tick bite; 3) endemic regions indicated they will treat LD without ordering serology for acute presentations or symptoms of LD; and 4) endemic and nonendemic regions indicated they will treat LD without ordering serology if erythema migrans rash is present (Table 3).

The only similarity between HCP disciplines was in the presence of an erythema migrans rash, where many family physicians (n = 10), ID physicians (n = 4), and some emergency physicians (n = 2) in endemic and nonendemic regions indicated that serology was not needed to diagnose and treat LD. The findings from this category highlight the variations in the decision-making processes for Family physicians, nurse practitioners, emergency physicians, and one ID physician when it comes to ordering serology for LD diagnosis.

Category 2: Barriers to LD diagnosis and treatment are multifaceted and often dependant on location and HCP discipline

Category 2 included four subcategories explaining the barriers to LD diagnosis and treatment. One significant barrier was the difficulty HCPs faced in determining the appropriateness of serology testing. This issue is particularly pronounced in cases where patients are either unaware of a tick bite or present a physical tick for testing.

Family Physicians practising in nonendemic areas, or who were not provided training on LD in their medical education, were most likely to identify the need for more information about LD diagnosis. Unfortunately, HCP lack of knowledge sometimes led to misconceptions and disagreements between patients’ health care expectations and the HCP's diagnostic approach, such as patients either disagreeing with or failing to understand the strategies employed by HCPs for LD diagnosis and treatment. For example, Participant 41 (non-ID specialist) stated, “In certain contexts, the barrier is that patients do not [kind of] agree with your approach.” Additionally, the effectiveness of serological testing was compromised by the long wait times required to obtain results, further complicating the diagnostic process.

Notably, family physicians and nurse practitioners indicated that a lack of knowledge about serology testing, ambiguous patient history, and challenges obtaining physical ticks to send for testing were the most prevalent barriers to LD diagnosis (Table 4). Often, this barrier resulted in longer diagnosis times or uncertainty about the approach HCPs should take to determine LD diagnosis. In contrast, ID physicians frequently highlighted patient perceptions and attitudes toward HCPs as the primary impediments to LD diagnosis and treatment. This finding was discussed by ID physicians, who indicated there was a growing tendency among patients to self-diagnose LD, regardless of clinical evidence. Respondents reported that patients expressed disappointment and anger upon receiving negative serology results or being informed by the ID physician that they did not have LD. They felt that the frustration experienced by patients, and disagreement with HCPs, created a negative patient–practitioner relationship. As such, many HCPs indicated that there needed to be a delicate balance between clinical judgment and managing “really angry” patients.

Table 4:

Barriers for Lyme disease diagnosis and treatment

HCP	Identified barriers to LD diagnosis and treatment	No. (%) of instances
Family physicians (n = 20)	Patients not remembering if they have been bitten by a tick is a barrier for LD diagnosis	6 (30)
	Difficulty clearly ordering and interpreting serology tests	5 (25)
	Vague symptoms of LD challenging to diagnose (ie, fever, fatigue, rash)	5 (25)
	Patients do not agree with, or challenge, HCPs’ approach to diagnosis and treatment	3 (15)
	Difficulty getting timely results with serology testing	2 (10)
	Inaccurate or insufficient patient histories hinder LD patient care	1 (5)
	Difficulty getting in touch with other specialists for LD diagnosis	1 (5)
	Inconsistent guidelines are challenging for LD diagnosis	1 (5)
	Difficulty determining the duration or dose of antibiotic treatments	1 (5)
Nurse practitioners (n = 6)	Patients not remembering if they have been bitten by a tick is a barrier for LD diagnosis	1 (16.7)
	Vague symptoms of LD challenging to diagnose (ie, fever, fatigue, rash)	1 (16.7)
	Challenges with diagnosis as LD is frequently misdiagnosed for other skin conditions	1 (16.7)
	Difficulty clearly ordering and interpreting serology tests	1 (16.7)
	Patients do not agree with, or challenge, HCPs’ approach to diagnosis and treatment	1 (16.7)
Emergency physicians (n = 6)	Vague symptoms of LD challenging to diagnose (ie, fever, fatigue, rash)	3 (50)
	There is a need for more clarity in the guidelines for when use serology testing	2 (33.3)
	Patients do not agree with, or challenge, HCPs’ approach to diagnosis and treatment	1 (16.7)
	Difficulty clearly ordering and interpreting serology tests	1 (16.7)
Infectious disease physicians (n = 7)	Patients do not agree with, or challenge, HCPs’ approach to diagnosis and treatment	3 (42.9)
	Patients travelling to the United States for diagnosis a barrier	1 (14.3)
	Vague symptoms of LD challenging to diagnose (ie, fever, fatigue, rash)	1 (14.3)
	Patient histories may be inaccurate or insufficient due to length of time since symptoms started	1 (14.3)
Non-ID specialists (n = 4)	Difficulty getting timely results with serology testing	2 (50)
	Patients do not agree with, or challenge, HCPs’ approach to diagnosis and treatment	2 (50)
	There is a need for more community-based treatment options for intravenous LD treatment	1 (25)
	There is a need for more knowledge and information for HCPs to diagnose and treat LD	1 (25)
	Barrier to diagnose Lyme carditis due to a lack of timely results with serology testing	1 (25)

HCP = Health care practitioner; ID = Infectious disease; LD = Lyme disease

Theme 3: HCPs have challenges and disagreement toward diagnosing and treating chronic LD

Theme 3 was identified from the analysis of two categories and six subcategories (Table 5). All HCP disciplines discussed the diagnosis and treatment of chronic LD. In this section of the results, the term “chronic LD” is used instead of “post-treatment LD” because it was the preferred terminology of the participants. All participants were given the option to use either term based on their preference or understanding of the topic. Notably, only five participants used the term “post-treatment LD,” while the majority opted for “chronic LD.” Many HCPs, including seven family physicians, two ID physicians, one emergency physician, and one nurse practitioner, acknowledged the controversy between and within HCPs and patients around the symptoms, manifestations, and existence of chronic LD. This controversy was guided by the diversity between HCP disciplines in their belief that chronic LD exists. Specifically, four ID physicians, six family physicians, one nurse practitioner, and one emergency physician indicated they tend not to believe in chronic LD. This included seven HCPs who practised in endemic regions and five who practised in nonendemic regions. However, seven family physicians, two ID physicians, two nurse practitioners, and one non-ID specialist indicated they did believe in the existence of chronic LD and were willing to discuss long-term and chronic symptoms with patients. Of these HCPs, five practised in endemic regions and seven practised in nonendemic regions. This was then contrasted by a group of HCPs, including five family physicians, one nurse practitioner, one emergency physician, and one ID physician, who indicated that they were neutral or unsure about the existence of chronic LD. Of these eight HCPs, five practised in endemic regions and three practised in nonendemic regions.

Table 5:

Theme 3—Health care practitioners have challenges and disagreement toward chronic Lyme disease

Categories of themes	Subcategories of themes	No. HCPs	Representative quotes
General agreement that diagnosing and treating chronic LD is controversial and frustrating for HCPs and patients, resulting in diverse diagnosis and treatment decisions across Canada	There is controversy between HCPs and patients around the symptoms, manifestations, and existence of chronic LD	7 FP 2 ID 1 EP 1 NP	“…there's the question of chronic Lyme disease… which is like a bit controversial in terms of type of manifestations, chronic fatigue, chronic pain, things like that…” (Participant 19, FP)
	HCPs indicated that the controversy about whether or not chronic LD exists is due to limited research evidence and information	4 FP 1 NP 1 ID 1 EP	“Well chronic Lyme, we have problems with that… there is [no consensus] and great controversy right now among specialists… to know if chronic Lyme exists and … how we have to treat it here… I don't think there is much evidence at the moment, so there are very varied practices.” (Participant 43, FP)
Diversity expressed by HCPs with regard to the existence of chronic LD and treatment options	HCPs indicated they tend not to believe in chronic LD, resulting in a resistance to providing antibiotics	6 FP 4 ID 1 NP 1 EP	“For me, there isn't a chronic Lyme (laughs)… there is this conspiracy theorist's movement both within the chronic Lyme patients and also within some medical practitioners and naturopathic practitioners that make my job quite difficult.” (Participant 39, ID)
	HCPs indicated they tend not to believe in the efficacy of American diagnosis and treatment for chronic LD	3 FP 4 ID 1 NP 1 non-ID	“I know some our patients are like running around going to these Lyme clinics in the States and they get in these massive courses of antibiotics, and doing all these things that are really bad for their health, but… they're invested in it, so they spend all their money.” (Participant 5, FP)
	HCPs indicated they tend to believe in chronic LD and are willing to discuss long-term and chronic symptoms with patients	7 FP 2 NP 2 ID 1 non-ID	“So chronic disease, of course, tends to be more [patient stigma]. I mean people, some people, some medical professionals, I would say think that it doesn't exist um as an illness, which is silly, because of course it does.” (Participant 1, FP)
	HCPs indicated they are neutral or unsure about existence of chronic LD and therefore base their treatment off other physician or specialist's suggestions	5 FP 1 NP 1 EP 1 ID	“Sure, so I have one patient who specialists from the States says she has chronic Lyme. I, again, I'm not an expert, and so I'm going based on this physician's opinion. And so – and so, this patient, I give her antibiotics…” (Participant 10, FP)

EP = Emergency physician(s); FP = Family physician(s); HCP = Health care practitioner; ID = Infectious disease physician(s); LD = Lyme disease; non-ID = Non-infectious disease specialist physician(s); NP = Nurse practitioners(s)

Category 1: General agreement that diagnosing and treating chronic LD is controversial and frustrating for HCPs and patients, resulting in diverse diagnosis and treatment decisions across Canada

Category 3 includes two subcategories: 1) There is controversy between HCPs and patients around the symptoms, manifestations, and existence of chronic LD; and 2) HCPs indicated that the controversy about whether chronic LD exists is due to limited research evidence and information (Table 5). Two ID physicians and seven family physicians believed that the misinformation and controversy surround the diagnosis and treatment of chronic LD in Canada has led to fear and mistrust in patients, with one of these family physicians (Participant 18) stating, “But, there are people who are really worried, because… chronic Lyme disease… is controversial. So, there are people who are [a bit scared].” Some HCPs, including four family physicians, one nurse practitioner, one ID physician, and one emergency physician, argued that the controversy around chronic LD existed due the identified need for more knowledge and evidence-based research on LD available to the community. However, few HCPs (ie, one family physician, nurse practitioner, and ID physician) indicated that they believe the controversy was due to a “medical stigma” around chronic LD, which is impacted by HCPs who do not believe in its existence.

Category 2: Diversity expressed by HCPs with regard to the existence of chronic LD and treatment options

The second category was developed from four subcategories, including HCPs indicated they: 1) tend not to believe in chronic LD, resulting in resistance to providing antibiotics; 2) tend not to believe in the efficacy of American diagnosis and treatment for chronic LD; 3) tend to believe in chronic LD and are willing to discuss long-term and chronic symptoms with patients; and 4) are neutral or unsure about existence of chronic LD and therefore base their treatment on other physician or specialist suggestions (Table 5).

Of the HCPs who expressed a disbelief in the existence of chronic LD, one family physician indicated that they strongly opposed the idea of chronic LD, arguing that there was little evidence to support the existence of chronic LD. When speaking of long-term LD symptoms, this HCP stated “[it is a] supposed disease called chronic Lyme which no serious scientist, or serious physician or academic physician, really believes exists.” (Participant 5, family physician). One ID physician (Participant 35) described their disbelief in chronic LD as “orthodox” and stated, “…basically what is called chronic Lyme… is not something that we [infectious disease physicians] accept as being actually a disease entity.”

Some HCPs (ie, five ID physicians, one family physician, and one emergency physician) also compared the misinformation surrounding chronic LD to the recent COVID-19 antivax information, stating “…and you talk about misinformation in the age of COVID. That misinformation was invented for Lyme disease.” (Participant 37, ID Specialist). These HCPs also indicated there is a general need for more knowledge and evidence-based research on chronic LD.

Alternatively, two ID physicians expressed a strong belief in chronic LD and argued that the medical community often mistreats or stigmatizes patients with chronic LD. One of these ID physicians, who has substantial clinical experience working with patients with chronic LD and other chronic health conditions, also suggested that there is a need for more evidence and knowledge on chronic LD diagnosis and treatment. The belief in chronic LD was also shared by seven family physicians, two nurse practitioners, and one non-ID Specialist.

For some HCPs, including five family physicians, one emergency physician, one nurse practitioner, and one ID physician, perceptions about chronic LD were neutral or unclear. These HCPs indicated that they lacked practical clinical experience with chronic LD, with one describing it as a “grey area” for them in their medical practice (Participant 12, family physician). As such, they described chronic LD to be difficult to understand, diagnose, and treat due to the scarcity of research and information available. HCPs who did not believe in chronic LD indicated that they would refer patients to an ID physician or Internal Medicine for further testing. Alternatively, HCPs who did believe in chronic LD were more inclined to run additional tests with their patients.

Theme 4: HCPs have trust in one (among several) LD guidelines, yet consult a variety of secondary sources for additional LD knowledge

Theme 4 emerged from the analysis of two categories and six subcategories (Table 6). Most HCPs (n = 31) indicated that they primarily have a high level of trust in one of the current LD guidelines, affirming their belief that guidelines encompass the latest evidence for the diagnosis and treatment of LD in Canada. Among those who did not trust current guidelines, five HCPs acknowledged their lack of familiarity, while two mentioned they would only use information that they deem rigorous and “scientific” in the guidelines. An additional five HCPs indicated a need for current LD guidelines to include more comprehensive and up-to-date information before they became trustful. Two family physicians, one nurse practitioner, one emergency physician, one non-ID specialist, and one ID physician raised concerns about the lack of clarity and research supporting diagnosis and treatment protocols for chronic LD.

Table 6:

Theme 4—HCP have trust in one (among several) Lyme disease guidelines

Categories of themes	Subcategories of themes	No. HCPs	Representative quotes
Secondary knowledge and information on LD are obtained and used from diverse sources across all HCP disciplines	Use of public health website and events for information on LD	7 FP 3 non-ID 3 ID 1 NP 1 EP	“…public health for sure as well, both my provincial and national public health websites. A little bit the CDC as well, the information there are interesting.” (Participant 4, Non-ID)
	Use of UpToDate website for information on LD	6 FP 3 ID 2 NP 1 EP 1 non-ID	“I always go to UpToDate. It's a website for health professionals and has really good up-to-date information on prescribing and also like pathophysiology, testing, signs, and symptoms for different um medical issues and diseases.” (Participant 10, FP)
	Medical training, conferences, and continuous education sessions provide HCPs with additional information on LD	14 FP 5 NP 3 ID 2 EP 1 non-ID	“I think I learned about it in medical school, though we didn't have Lyme in [location, redacted for confidentiality] where I trained.” (Participant 5, FP) “I did the Lyme disease educational webinars. So, I listened to the webinars and updates on the Lyme disease.” (Participant 16, NP)
	Use of journal articles and academic literature for knowledge on LD	7 FP 3 non-ID 3 ID 2 NP 1 EP	“I think primary literature is always the best… so, I read review articles, like in the New England Journal or I guess the Canadian, the JAMA.” (Participant 27, FP)
Most HCPs trust IDSA and/or INESSS guidelines for diagnosing and treating LD	IDSA guidelines are indicated to be the most trusted and used for diagnosing and treating LD across Canada for all HCP disciplines	7 ID 2 FP 1 non-ID	“I mean given that it's an infectious disease I would probably go to the Infectious Disease Society of America's (IDSA) website ‘cause they tend to be the clearinghouse for infectious disease guidelines…” (Participant 9, FP)
	HCPs in Quebec indicated they trust and use INESSS guidelines when diagnosing and treating LD	5 FP 3 NP 1 EP	“Uhm, it's sure that the INESSS guides us, it's really the ‘Golden standard’ there. Like, we take that and we use it really like a bible, because everything is in there…” (Participant 22, NP)

EP = Emergency physician(s); FP = Family physician(s); HCP = Health care practitioner; ID = Infectious disease physician(s); IDSA = Infectious Disease Society of America; INESSS = Institut national d'excellence en santé et en services sociaux; LD = Lyme disease; non-ID = Non-infectious disease specialist physician(s); NP = Nurse practitioners(s)

Category 1: Secondary knowledge and information on LD are obtained and used from diverse sources across all HCP disciplines

Category 1 was identified from four subcategories including: 1) use of public health website and events for information on LD; 2) use of the UpToDate website for information on LD; 3) medical training, conferences, and continuous education sessions provide HCPs with additional information on LD; and 4) use of journal articles and academic literature for knowledge on LD (Table 6). The range of sources used by HCPs for additional LD information, outside of current guidelines, varied across HCP discipline and location.

Category 2: Most HCPs trust IDSA and/or INESSS guidelines for diagnosing and treating LD

Category 2 included two subcategories: 1) IDSA guidelines are indicated to be the most trusted and used for diagnosing and treating LD across Canada for all HCP disciplines; and 2) HCPs in Quebec indicated they trust and use INESSS guidelines when diagnosing and treating LD. While the most common guidelines used by HCPs in this study were IDSA and INESSS guidelines, some HCPs across specialities, provinces, and low-endemic regions referred to the use of other sources such as public health websites or UpToDate. A full outline of guidelines used by HCP disciplines can be found in Table 7. Notably, when discussing guidelines they would avoid, some ID Physicians specifically cautioned against the ILADS guidelines, stating that “I think that if you go and do a Google search on Lyme disease, you don't find good information. You find ILADS…” (Participant 33, ID Physician). They believe that relying on the ILADS guidelines for LD diagnosis and treatment would likely result in patients receiving misinformation and a misdiagnosis of chronic LD.

Table 7:

Healthcare practitioner (HCP) disciplines’ use of Lyme disease (LD) guidelines and resources

Guideline/organization name	HCP disciplines who use guidelines	Specific details related to HCP perspectives of LD guidelines
Infectious Diseases Society of America (IDSA)	Family physicians, non-infectious disease specialists, infectious disease physician, nurse practitioners	Most frequently used guidelines for diagnosing and treating LD in Canada
Institut National d'Excellence en Sante et en Services Sociaux (INESSS)	Practitioners in Quebec	Commonly used in Quebec
International Lyme and Associated Disease Society (ILADS)	Patients, naturopaths, and practitioners who use “unorthodox practices”—as identified by some HCPs in this study	Considered to be unreliable by some infectious disease physicians
Provincial or local public health guidelines	Practitioners in low-endemic regions	Commonly used in low-endemic regions such as Newfoundland and northern areas of Ontario
UpToDate	Used by all HCP disciplines	Widely used as a convenient resource for identifying LD guidelines and information

While trusting of the current LD guidelines, many HCPs expressed concerns with the limited research and knowledge surrounding chronic LD, as indicated by Participant 9 (Nurse Practitioner): “I think there's more research that needs to be done and I think there should be more information about chronic Lyme disease…” HCPs highlighted the need for additional research and knowledge on chronic LD through evidence-based research studies such as randomized control trials. Many HCPs indicated they were receptive to implement “cutting edge” research not yet integrated into guidelines if it was conducted by experts, specialists, and colleagues, published in reputable journals, and endorsed by public health.

Discussion

In Canada, HCPs exhibit inconsistent approaches to LD diagnosis and treatment, influenced by their knowledge and experience. The diagnostic process for LD is complicated by the disease's diverse presentation and progression. Distinguishing between cases in endemic versus nonendemic areas and acute or chronic stages poses significant difficulties. Inconsistencies in HCP practices and beliefs exacerbate the challenges associated by the complex presentation of LD, leading to potential delays in, or lack of, diagnosis and treatment. The variability in diagnosis creates a substantial risk for patients who may be overlooked or misdiagnosed. Moreover, practitioners excluding LD or delaying referrals to ID physicians based on lack of travel history and tick exposure can put patients at greater risk for symptom progression. In the face of climate change and expansion of LD endemic regions, there is an urgency to better prepare both endemic and nonendemic regions for the escalating LD incidence in Canada. Recent research by Tardy et al (40) suggests that suitable habitats for infected black-legged ticks in Canada could expand by 31% due to rising temperatures accelerating tick spread northward at a rate of 61 km/year. This predicted spread of infected back-legged ticks further necessitates heightened awareness and preparedness among both public health and HCPs for effective LD management.

Comparing across HCPs

Across the four overarching themes identified in this study, correlations between HCPs and their perspectives on LD were revealed. While some HCPs displayed uniformity in treatment strategies, ID physicians stood out for their increased and specialized use of intravenous treatments based on specific patient symptoms. Notably, these ID physicians did not discuss providing prophylaxis treatment to patients, but were likely to treat for acute LD without serology if erythema migrans was present. Interestingly, ID physicians were also particularly divided when discussing chronic or post-treatment LD. HCPs in general (including family physicians, ID physicians, nurse practitioners, and emergency physicians) who expressed disbelief in chronic or post-treatment LD were also more likely to be critical of ILADS guidelines, warning against potential misinformation.

Among the family physicians, nurse practitioners, and emergency physicians who were skeptical of chronic or post-treatment LD, there was a reluctance to provide long-term antibiotic treatments to patients with persisting LD symptoms. Conversely, HCPs who believed in chronic or post-treatment LD were more inclined to discuss long-term symptoms and pursue additional diagnostic tests. Most family physicians, nurse practitioners, and emergency physicians exhibited varied approaches to ordering serology tests and were more likely to have limited knowledge, leading to referrals or consultations with ID physicians. In contrast, ID physicians, without the option for referral to another speciality, did not indicate being influenced by a lack of knowledge. Instead, they highlighted patient perceptions and negative attitudes as primary barriers to LD diagnosis and treatment. The division in perspectives, particularly concerning chronic or post-treatment LD, highlights the necessity for comprehensive education and improved knowledge dissemination. By addressing these disparities, we can ensure that patients receive consistent and accurate diagnoses and treatments, ultimately improving patient outcomes and reducing the controversy surrounding LD management.

Despite most HCPs trusting existing LD guidelines, there are notable inconsistencies in HCP knowledge and clinical application of LD diagnosis and treatment practices in Canada. Enhanced education, collaboratively designed with patients, has the potential to support patient care and the uniformity of LD diagnosis and treatment. This change requires both knowledge and attitudinal changes, fostering open dialogue and honest conversations about LD experiences and beliefs for all HCPs. The need for a more comprehensive and patient-centred approach in the diagnosis and treatment of LD is vital, given the diverse challenges and implications from both patient and HCP perspectives. The need for unified LD education to standardize care nationwide aligns with previous research by Smith et al (41) and Johnson and Stricker (42), further justifying the importance of clear communication and coordinated efforts between HCPs, training institutions, and health care organizations in Canada.

Exploring diversity in HCPs’ belief in chronic LD

Although antibiotic stewardship must be considered (43,44), there are concerns with underdiagnosing patients exhibiting atypical symptoms or those who reside in nonendemic areas (45). The inadequacy of serology testing in early-stage LD can lead to missed diagnosis, as dependence on these tests as the primary diagnostic criterion overlooks the disease's early manifestations, exacerbating the issue of underdiagnosis and highlighting a potential gap in current practices (45,46). Moreover, while the Canadian treatment protocol for acute LD is relatively straightforward and established, the approach taken by our participants for chronic LD lacked clarity and uniformity. While the treatment of patients who meet the case definition for post-treatment LD syndrome remains challenging in Canada (17), recent advancements have characterized post-treatment LD as a well-defined subset of individuals with persistent or chronic LD symptoms (ie, 47,48). Throughout this discussion, we adopt the terminology post-treatment LD to align with this literature. Standardized measurements of subjective symptoms and uniform eligibility and exclusion criteria have been established to aid in the diagnosis and treatment of post-treatment LD (49, 50, 51).

In our study, patient care for the diagnosis and treatment of post-treatment LD heavily depended on specialists who exhibited skepticism regarding the condition's existence, creating inconsistent and inequitable care. For instance, there may be challenges in receiving diagnosis and treatment for patients’ whose LD symptoms are vague and/or they are referred to HCPs who may doubt the existence of post-treatment LD. Moreover, our findings revealed that many HCPs believe that the controversy surrounding post-treatment LD stems from limited knowledge and research supporting its existence. Therefore, increased knowledge dissemination is necessary to ensure that HCPs in Canada have the most current information on post-treatment LD, enabling them to provide patients with the most accurate and up-to-date diagnoses and treatments.

Compelling evidence supporting the existence of post-treatment LD has emerged in recent years, demanding increased knowledge translation efforts to ensure consistent diagnosis and treatment by HCPs. As stated by Rebman, Yang, and Aucott (52, p1):

While the majority of patients treated appropriately for Lyme disease recover, a subset develops a poorly understood, chronic illness of persistent or recurrent symptoms following treatment. The presence of chronic or persistent symptoms following acute infection has been documented in a subset of patients for a number of viral and bacterial pathogens.

In 2020 evidence supporting post-treatment LD surfaced, and subsequent research in 2022 and 2023 further substantiated the existence of post-treatment LD (53,54). For example, two prospective randomized controlled trials revealed a 10% higher risk of post-treatment LD among individuals with acute LD symptoms compared with those without (53,55). In their study on the association of persistent symptoms after Lyme neuroborreliosis, Hernández et al (54, p1091) also stated “a subset of patients have sequelae, such as headache, fatigue, sleep or memory disturbance, and arthralgias or myalgias that persist for months to years after antibiotic use, termed post-treatment Lyme disease symptoms or syndrome.” Additional predictors of persistent symptoms after treatment for Lyme borreliosis include fatigue, cognitive impairment, pain, and the presence of baseline symptoms, including negative illness perceptions, poorer physical and social functioning, greater levels of depression and anxiety, and comorbidities (56).

The emerging challenges and discrepancies between patient care and HCPs beliefs surrounding post-treatment LD in our study highlight the need for a deeper understanding of the condition. Addressing these discrepancies also requires equipping HCPs with adequate resources, education, and guidance to ensure that patients receive consistent care. Given the identified need for more knowledge on, and acceptance of, post-treatment LD by HCPs in Canada (53,55), supported by findings from participants in this study, it is advisable for HCP regulatory bodies, provincial organizations, and national health agencies to collaborate with patient advocacy groups to establish a unified and regulated approach for the diagnosis and treatment of post-treatment LD.

Limitations

The study findings’ generalizability may be limited by the low initial response rate from specific HCP groups, including a lack of non-ID specialists and ID physicians outside of British Columbia, and HCPs in Canadian territories. However, additional sampling methods were implemented to reach as many potential participants as possible during the recruitment period.

Another limitation is that this study was conducted during the COVID-19 pandemic, which significantly delayed recruitment due to the reluctance to divert HCPs from addressing the medical crisis. As such, additional recruitment methods using snowball sampling methods were implemented to extend recruitment efforts. Finally, a notable limitation of our study was the regulatory disparity in pharmacists’ prescribing rights across provinces at the time of our interviews; unlike Quebec, Ontario pharmacists could not prescribe post-exposure tick bite treatments. This discrepancy highlighted the regional differences in health care practices within Canada. However, this limitation has since been resolved, with Ontario pharmacists gaining prescribing rights as of January 2024 (57).

Conclusion

In summary, this study highlights the complexities of LD diagnosis and treatment in Canada, specific to the experiences, perspectives, knowledge, and beliefs of HCPs. There is an identified need for continued research, improved guideline clarity, and effective knowledge dissemination and education strategies to enhance the quality and consistency of LD care in Canada.

Appendix A: Lyme Disease Study—Health Practitioner Interview Script

First, we will get consent to audio and video record this interview. All data will be kept confidential and in a secure location.

Introduction

Now that you have provided verbal consent to audio and video record this interview, I would like to start by thanking you for your willingness to participate in this research study today.

The purpose of this study is to better understand the perspectives, experiences, beliefs, and knowledge of current health practitioners, such as yourself, in the diagnosis and treatment of Lyme disease in Canada. We have specifically selected a semi-structured interview format to allow you to express your own ideas and perceptions of this topic. The interview will take around 30–40 minutes. I would like to note here that if at any time you feel that you do not want to carry on with the interview, you may withdraw with absolutely no consequences. Finally, you can be sure that the information you share today will remain confidential and will eventually be presented in aggregate form. Do you have any questions before we begin? [Answer any questions participant has about the study]

Consent

To start, I would like to ask you to provide verbal consent to participate in this study. Do you provide consent to participate in this study and interview, knowing that all information will be kept confidential and eventually presented in aggregate form in the future?

[If they agree to the study, continue below]

Thank you. We have developed a series of questions related to your perspectives, experiences, and beliefs when diagnosing and treating Lyme disease. These questions are open-ended, so you are welcome to add in any information that you think is pertinent to the interview. The interview will be broken into four sections focused on different aspects of the research topic.

Section A. Background information about the health influencer (Individual Domain)

• 1.How would you define Lyme disease?
  • a.What has informed this definition?
    • i.Prompt: Your professional society? Discussions with other health professionals? Scholarly literature? Media?
  • b.What are the impacts of Lyme disease on a patient if it is not initially cured?
• 2.Take me through your process when you encounter a patient you suspect may have Lyme disease.
  • a.Considering the information you just provided, _____.
    • i.Prompt: Patient suspected, or physician suspected
    • ii.Prompt: What course of action did you suggest?
    • iii.Prompt: What was the patient's response?
  • b.How do you address a patient with a tick bite when you do not suspect Lyme disease?
  • c.How do you address a patient with a tick bite when you do suspect Lyme disease?
  • d.Describe any barriers you face when caring for patients with diagnosed and/or suspected Lyme disease
    • i.Prompt: Acute and/or post-treatment Lyme disease
    • ii.Prompt: Information resource requirements
    • iii.Prompt: Clinical tool requirements (eg, diagnostics, education, treatment)
• 3.From your understanding, how common is Lyme disease in your area?
  • a.How might you obtain information on the rates of Lyme disease in your area?

Section B. Evaluation of the diagnosis and treatment of Lyme disease (Outer and Inner Setting)

• 4.Could you describe what has guided your diagnosis and/or treatment of Lyme disease? (OS)
  • a.If so, which guidelines and policies do you find most useful?
  • b.What are the treatment protocols for Lyme disease as you understand them?
  • c.What (if anything) makes using guidelines and policies challenging? (OS)
  • d.Are their supports from regulatory bodies and/or the scientific community that would help you diagnose and treat Lyme disease? (OS)
  • e.Has coordinating with peers improved your care when diagnosing and treating Lyme disease? (IS)
  • f.Generally speaking, what are your peers’ and colleagues’ feelings about the diagnosis and treatment of Lyme disease? (IS)
    • i.How has that effected your perspectives? (IS)
• 5.To what extent do you think that patients believe that Lyme disease is effectively diagnosed and treated? (OS)
  • a.Are you aware of any barriers patients have experienced in receiving effective Lyme disease diagnosis and treatment? (OS)
• 6.Have patients’ stories, experiences and/or concerns influenced how you diagnose and treat Lyme disease? How? (OS)
  • a.Prompt: Acute and/or post-treatment Lyme disease

Section C. Intervention evaluation (Intervention and Process)

• 7.In the region that you practice, to what extent do you trust that the existing guidelines have incorporated the latest evidence on Lyme disease?
  • a.Would you be willing to act on new Lyme disease research if it was not reflected in your guidelines? To what extent?
    • i.If yes, what type of information would you be most likely to act upon?
    • ii.If yes, how could this information be most effectively provided to you?

Section D.

• 8.Do you believe that other diseases could be transmitted by ticks alongside Borrelia?
  • a.Prompt: Have you read or come across this possibility before?
• 9.How do you think research into other tick-borne pathogens may influence your diagnosis and treatment of Lyme disease in the future?

Section E. Closing thoughts

• 10.Do you have any further comments or questions that you would like to share?

Appendix B: Protocole D'entrevue Pour Les Professionnels De la Santé

Introduction

J'aimerais commencer par vous remercier pour votre volonté de participer dans cette étude de recherche aujourd'hui. Le but de cette étude est de mieux comprendre les perspectives, expériences, croyances, et connaissances des professionnels de la santé par rapport aux diagnostics et traitements de la maladie de Lyme au Canada. Nous avons choisi spécifiquement un format d'entrevue semi-structuré pour vous permettre d'exprimer vos propres idées et perspectives par rapport à ce sujet. J'aimerais noter ici qu’à n'importe quel point, si vous voulez cesser cette entrevue, vous êtes libre de vous retirer avec absolument aucune conséquence. Finalement, vous pouvez être assuré que toutes informations que vous partagez aujourd'hui resteront confidentielles et seront éventuellement présentées sous forme agrégée. Avez-vous des questions avant de commencer ? [Répondre aux questions qu'a le participant au sujet de l’étude]

Consentement

Donnez-vous votre consentement pour votre participation dans cette étude et cette entrevue ? En addition, donnez-vous votre consentement à l'enregistrement vidéo et audio de cette entrevue ? Soyez rassuré que tous enregistrements audios et vidéos restent sécurisés et confidentiels.

[S'ils acquiescent à l’étude, continuer ci-dessous]

Merci. Maintenant que nous avons eu l'occasion de discuter l’étude et son but, seriez-vous prêts à continuer avec la portion entrevue? J'ai développé une série de questions associées à vos perspectives, expériences, et croyances lorsque vous diagnostiquez et traitez la maladie de Lyme. Ces questions sont ouvertes, donc, nous vous encourageons d'ajouter n'importe quelles informations que vous pensez pertinentes à l'entrevue.

Section A. Profil antérieur du professionnel de la santé (Domaine individuel)

• 1.Comment définiriez-vous la maladie de Lyme?
  • a.Quels facteurs informe cette définition?
    • i.Approfondir: votre société professionnelle? Des discussions avec d'autres professionnels de la santé? La littérature académique? Média?
  • b.Quelles sont les conséquences de la maladie de Lyme sur un patient qui n'est pas initialement traité?
• 2.Guidez-moi à travers votre processus lorsque vous faites face à un patient que vous soupçonnez avoir la maladie de Lyme.
  • a.Comment adressez-vous un patient avec une morsure de tique lorsque vous ne soupçonnez pas la maladie de Lyme?
  • b.Comment adressez-vous un patient avec une morsure de tique lorsque vous soupçonnez un cas de la maladie de Lyme?
  • c.Décrivez les barrières possibles auxquelles vous faites face lorsque vous soignez des patients diagnostiqués ou avec un cas soupçonné de la maladie de Lyme?
    • i.Approfondir: cas aiguë ou après le traitement de la maladie de Lyme.
    • ii.Approfondir: exigences des ressources d'informations.
    • iii.Approfondir: Exigences des outils cliniques (ex. diagnostiques, éducation, traitement).
  • d.Décrivez une de vos expériences avec un patient atteint de la maladie de Lyme dans laquelle vous étiez incertain comment fournir des soins efficaces.
    • i.Quelles représentations cliniques de la maladie de Lyme pensez-vous sont les plus difficiles à diagnostiquer et traiter. Pourquoi?
• 3.Décrivez vos expériences avec des patients qui démontrent, ou, que vous soupçonnez avoir la maladie de Lyme.
  • a.Approfondir: Patients soupçonne, ou médecins soupçonne
  • b.Approfondir: quel plan d'action avez-vous suggéré?
  • c.Approfondir: quelle était la réponse du patient?
• 4.Selon votre compréhension, quelle est la fréquence de la maladie de Lyme dans votre région
  • a.Approfondir: comment avez-vous obtenu vos informations sur les taux de la maladie de Lyme dans votre région ?

Section B. Évaluation du diagnostic et traitement de la maladie de Lyme (contexte intérieur et extérieur)

• 5.Pourriez-vous décrire ce qui guide votre diagnostic ou traitement de la maladie de Lyme? (CE)
  • a.Si oui, quelles lignes directrices et politiques sont les plus utiles?
  • b.Quels sont les protocoles de traitement pour la maladie de Lyme selon votre compréhension?
  • c.Quelles (s'il y en existe) sont les difficultés auxquels vous faites face pendant l'utilisation des lignes directrices et politiques? (CE)
  • d.Y a-t-il des appuis qui proviennent des organismes de réglementations ou de la communauté scientifique qui pourraient vous aider à diagnostiquer et traiter la maladie de Lyme? (CE)
  • e.La coordination avec vos collègues a-t-elle amélioré vos soins pendant le processus de diagnostic et traitement de la maladie de Lyme?
  • f.Généralement, quels sont les sentiments de vos pairs et collègues par rapport aux diagnostics et traitements de la maladie de Lyme ? (CI)
    • i.Comment ces perspectives extérieurs ont-elles impacté votre propre perspective?
• 6.Dans quelle mesure pensez-vous que les patients croient que la maladie de Lyme est diagnostiquée et traitée de manière efficace? (CE)
  • a.Êtes-vous au courant de barrières possibles auxquelles les patients ont fait face en recevant leurs diagnostics et traitements efficaces de la maladie de Lyme? (CE)
• 7.Les histoires, expériences ou inquiétudes de vos patients ont-ils influencé comment vous diagnostiquez et traitez la maladie de Lyme ? Si oui, comment? (CE)
  • a.Approfondir: Cas aiguë ou après le traitement de la maladie de Lyme.

Section C. Évaluation de l'intervention (Intervention et Processus)

• 8.Dans quelle mesure faites-vous confiance que les lignes directrices existantes dans votre région, ont incorporé les dernières preuves concernant la maladie de Lyme?
  • a.Seriez-vous prêt à agir sur une nouvelle recherche de la maladie de Lyme si celle-ci diffères de vos lignes directrices ? Dans quelle mesure ?
    • i.Si oui, quel type d'informations vous inciterais le plus d'agir?
    • ii.Si oui, quel serait le moyen le plus efficace de vous fournir ces informations?

Section D.

• 9.Dans quelle mesure êtes-vous conscient de la propagation de pathogènes humains, autres que la maladie de Lyme, par tiques (c'est-à-dire. La famille bactériale Borrelia)?
• 10.Comment pensez-vous que la recherche concernant les agents pathogènes transmis par les tiques peut potentiellement influencer vos diagnostics et traitements de la maladie de Lyme dans le futur?

Section E. Dernières pensées

• 11.Avez-vous de derniers commentaires ou questions que vous aimeriez partager?

Merci pour votre temps aujourd'hui, nous apprécions profondément vos contributions et votre participation.

Funding Statement

This study was funded by the Canadian Institutes of Health Research (CIHR) (Funding Reference Number 160482).

Contributors:

Conceptualization: R Egan; Methodology: M Robertson, R Egan; Formal Analysis: M Robertson, R Egan; Investigation: M Robertson; Data Curation: M Robertson, E Norris-Roozmon; Writing - Original Draft: M Robertson, R Egan; Writing - Review & Editing: M Robertson, E Norris-Roozmon, R Egan; Supervision: R Egan; Funding Acquisition: R Egan.

Ethics Approval:

This study was approved by the Queen's University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board, Kingston, Ontario, Canada on May 6 2020.

Informed Consent:

N/A

Registry and the Registration No. of the Study/Trial:

N/A

Data Accessibility:

The datasets used in the current study are not available due to maintaining participant confidentiality.

Funding:

This study was funded by the Canadian Institutes of Health Research (CIHR) (Funding Reference Number 160482).

Disclosures:

The authors have nothing to disclose.

Peer Review:

This manuscript has been peer reviewed.

Animal Studies:

N/A