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. 2024 Mar 22;24(1):344.
doi: 10.1186/s12879-024-09194-3.

Lyme borreliosis and medical wandering: what do patients think about multidisciplinary management? A qualitative study in the context of scientific and social controversy

Alice Raffetin  1   2   3 , Costanza Puppo  4 , Amal Chahour  5 , Assia Belkasmi  6 , Elisabeth Baux  7 , Solène Patrat-Delon  8 , Pauline Caraux-Paz  5 , Julie Rivière  9 , Sébastien Gallien  5   10   11
Affiliations

Lyme borreliosis and medical wandering: what do patients think about multidisciplinary management? A qualitative study in the context of scientific and social controversy

Alice Raffetin et al. BMC Infect Dis. .

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.

Keywords: Lyme borreliosis; Multidisciplinarity; Satisfaction; Shared information.

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Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Word cloud describing positive and negative aspects of the TBD-RC of Paris and the Northern Region from patients’ perspective
Fig. 2
Fig. 2
Summary of the methods and main findings about the reasons for satisfaction and dissatisfaction of the patients managed at the Tick-Borne Diseases Reference Center of Paris and the Northern Region
Fig. 3
Fig. 3
Modeling of the satisfaction with the diagnosis and management of patients with a suspected Lyme borreliosis in a multidisciplinary center such as the TBC-RC of Paris and the Northern region
See this image and copyright information in PMC

References

    1. Coumou J, Herkes EA, Brouwer MC, van de Beek D, Tas SW, Casteelen G, et al. Ticking the right boxes: classification of patients suspected of Lyme borreliosis at an academic referral center in the Netherlands. Clin Microbiol Infect. 2015;21(4):368.e11–20. doi: 10.1016/j.cmi.2014.11.014. - DOI - PubMed
    1. Jacquet C, Goehringer F, Baux E, Conrad JA, Ganne Devonec MO, Schmutz JL, et al. Multidisciplinary management of patients presenting with Lyme disease suspicion. Med Mal Infect. 2019;49(2):112–120. doi: 10.1016/j.medmal.2018.06.002. - DOI - PubMed
    1. Gynthersen RMM, Tetens MM, Ørbæk M, Haahr R, Fana V, Hansen K, et al. Classification of patients referred under suspicion of tick-borne diseases, Copenhagen, Denmark. Ticks Tick Borne Dis. 2021;12(1):101591. doi: 10.1016/j.ttbdis.2020.101591. - DOI - PubMed
    1. Raffetin A, Schemoul J, Chahour A, Nguala S, Caraux-Paz P, Paoletti G, et al. Multidisciplinary Management of Suspected Lyme Borreliosis: Clinical Features of 569 Patients, and Factors Associated with Recovery at 3 and 12 Months, a Prospective Cohort Study. Microorganisms. 2022;10(3):607. doi: 10.3390/microorganisms10030607. - DOI - PMC - PubMed
    1. Kortela E, Kanerva M, Kurkela S, Oksi J, Järvinen A. Suspicion of Lyme borreliosis in patients referred to an infectious diseases clinic: what did the patients really have? Clin Microbiol Infect. 2021;27(7):1022–1028. doi: 10.1016/j.cmi.2020.09.022. - DOI - PubMed