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Abstract Introduction To answer to patients’ medical wandering, often due to “unexplained symptoms” of “unexplained diseases” and to misinformation, multidisciplinary care centers for suspected Lyme borreliosis (LB), such as the 5 Tick-Borne Diseases (TBDs) Reference Centers (TBD-RC), were created a few years ago in France, the Netherlands and Denmark. Our study consisted of a comprehensive analysis of the satisfaction of the patients managed at a TBD-RC for suspected LB in the context of scientific and social controversy. Methods We included all adults who were admitted to one of the TBD-RC from 2017 to 2020. A telephone satisfaction survey was conducted 12 months after their first consultation. It consisted of 5 domains, including 2 free-text items: “What points did you enjoy?” and “What would you like us to change or to improve?”. In the current study, the 2 free-items were analyzed with a qualitative method called reflexive thematic analysis within a semantic and latent approach. Results The answer rate was 61.3% (349/569) and 97 distinctive codes from the 2-free-text items were identified and classified into five themes: (1) multidisciplinarity makes it possible to set up quality time dedicated to patients; (2) multidisciplinarity enables seamless carepaths despite the public hospital crisis compounded by the COVID-19 pandemic; (3) multidisciplinarity is defined as trust in the team’s competences; (4) an ambivalent opinion and uncertainty are barriers to acceptance of the diagnosis, reflecting the strong influence of the controversy around LB; and (5) a lack of adapted communication about TBDs, their management, and ongoing research is present. Conclusion The multidisciplinary management for suspected LB seemed an answer to medical wandering for the majority of patients and helped avoid misinformation, enabling better patient-centered shared information and satisfaction, despite the context of controversy.

Abstract Introduction Because patients with a “suspicion of Lyme borreliosis (LB)” may experience medical wandering and difficult care paths, often due to misinformation, multidisciplinary care centers were started all over Europe a few years ago. The aim of our study was to prospectively identify the factors associated with the acceptance of diagnosis and management satisfaction of patients, and to assess the concordance of the medical health assessment between physicians and patients 12 months after their management at our multidisciplinary center. Methods We included all adults who were admitted to the Tick-Borne Diseases Reference Center of Paris and the Northern Region (TBD-RC) (2017–2020). A telephone satisfaction survey was conducted 12 months after their first consultation. It consisted of 5 domains and 13 items rated between 0 (lowest) and 10 (highest grade): (1)Reception; (2)Care and quality of management; (3)Information/explanations given to the patients; (4)Current medical condition and acceptance of the final diagnosis; (5)Overall appreciation. Factors associated with diagnosis acceptance and management satisfaction at 12 months were identified using logistic regression models. The concordance of the health status as assessed by doctors and patients was calculated using a Cohen’s kappa test. Results Of the 569 patients who consulted, 349 (61.3%) answered the questionnaire. Overall appreciation had a median rating of 9 [8;10] and 280/349 (80.2%) accepted their diagnoses. Patients who were “very satisfied” with their care paths at TBD-RC (OR = 4.64;CI95%[1.52–14.16]) had higher odds of diagnosis acceptance. Well-delivered information was strongly associated with better satisfaction with the management (OR = 23.39;CI95%[3.52–155.54]). The concordance between patients and physicians to assess their health status 12 months after their management at TBD-RC was almost perfect in the groups of those with confirmed and possible LB (κ = 0.99), and moderate in the group with other diagnoses (κ = 0.43). Conclusion Patients seemed to approve of this multidisciplinary care organization for suspected LB. It helped them to accept their final diagnoses and enabled a high level of satisfaction with the information given by the doctors, confirming the importance of shared medical decisions, which may help to reduce health misinformation. This type of structure may be useful for any disease with a complex and controversial diagnosis.

Background: Most European and American countries recently updated their guidelines on Lyme borreliosis (LB). The aim of this study was to provide a comparative overview of existing guidelines on the treatment of LB in Europe and America and to assess the methodological quality of their elaboration. Methods: A systematic search was carried out in MEDLINE, Google Scholar, and the national databases of scientific societies from 2014 to 2020. Quality was assessed by two independent reviewers using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool. Results: Twelve guidelines were included. The scores for the AGREE II domains (median ± IQR) were: overall assessment 100 ± 22, scope and purpose 85 ± 46, stakeholder involvement 88 ± 48, rigour of development 67 ± 35, clarity of presentation 81 ± 36, applicability 73 ± 52 and editorial independence 79% ± 54%. Cohen’s weighted kappa showed a high agreement (K = 0.90, 95%CI 0.84–0.96). Guidelines were quite homogeneous regarding the recommended molecules (mostly doxycycline in the first intention and ceftriaxone in the second intention), their duration (10 to 28 days), and their dosage. The differences were due to the lack of well-conducted comparative trials. The International Lyme and Associated Diseases Society (ILADS) guidelines were the only ones to suggest longer antibiotics based on an expert consensus. Conclusion: European and American guidelines for the treatment of LB were quite homogeneous but based on moderate- to low-evidence studies. Well-conducted comparative trials are needed to assess the best molecules, the optimal duration and the most effective doses.