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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

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