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

TL;DR

This study explores how patients with suspected Lyme borreliosis perceive multidisciplinary care in specialized centers, finding that it helps reduce medical wandering and misinformation.

Contribution

The study introduces a novel qualitative analysis of patient satisfaction in multidisciplinary care for Lyme borreliosis amid scientific and social controversy.

Findings

Multidisciplinary care improves patient satisfaction by providing dedicated time and seamless carepaths.

Patient trust in the team's competence is central to care satisfaction.

Communication gaps and controversy around Lyme borreliosis remain significant challenges.

Abstract

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.

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.

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.

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.

The online version contains supplementary material available at 10.1186/s12879-024-09194-3.

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