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

Lyme borreliosis Multidisciplinarity Satisfaction Shared information

Journal

BMC infectious diseases
ISSN: 1471-2334
Titre abrégé: BMC Infect Dis
Pays: England
ID NLM: 100968551

Informations de publication

Date de publication:
22 Mar 2024
Historique:
received: 30 10 2023
accepted: 05 03 2024
medline: 23 3 2024
pubmed: 23 3 2024
entrez: 23 3 2024
Statut: epublish

Résumé

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.

Identifiants

pubmed: 38519907
doi: 10.1186/s12879-024-09194-3
pii: 10.1186/s12879-024-09194-3
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

344

Informations de copyright

© 2024. The Author(s).

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Auteurs

Alice Raffetin (A)

Department of Infectious Diseases, Tick-Borne Diseases Reference Center of Paris and the Northern Region, Centre Hospitalier Intercommunal de Villeneuve-Saint-Georges, 40 Allée de La Source, 94190, Villeneuve-Saint-Georges, France. alice.raffetin@chiv.fr.
EpiMAI Research Unity, Laboratory of Animal Health, Anses-National Veterinary School of Alfort, 7 Av. du Général de Gaulle, 94700, Maisons-Alfort, France. alice.raffetin@chiv.fr.
DYNAMIC Research Unity, UPEC-Anses, 8 Rue du Général Sarrail, 94000, Créteil, France. alice.raffetin@chiv.fr.

Costanza Puppo (C)

Department of Psychology, University Lyon II, France, UMR 1296, 86 Rue Pasteur, 69007, Lyon, France.

Amal Chahour (A)

Department of Infectious Diseases, Tick-Borne Diseases Reference Center of Paris and the Northern Region, Centre Hospitalier Intercommunal de Villeneuve-Saint-Georges, 40 Allée de La Source, 94190, Villeneuve-Saint-Georges, France.

Assia Belkasmi (A)

Department of Public Health, University of Versailles Saint-Quentin en Yvelines, 55 Avenue de Paris, 78000, Versailles, France.

Elisabeth Baux (E)

Department of Infectious Diseases, Tick-Borne Diseases Reference Center of the Eastern Region, Brabois Hospital, University Hospital of Nancy, Rue du Morvan, 54500, Vandœuvre-Lès-Nancy, France.

Solène Patrat-Delon (S)

Department of Infectious Diseases, Tick-Borne Diseases Reference Center of the Western Region, University Hospital of Rennes, 2 Rue Henri Le Guilloux, 35033, Rennes Cedex 9, France.

Pauline Caraux-Paz (P)

Department of Infectious Diseases, Tick-Borne Diseases Reference Center of Paris and the Northern Region, Centre Hospitalier Intercommunal de Villeneuve-Saint-Georges, 40 Allée de La Source, 94190, Villeneuve-Saint-Georges, France.

Julie Rivière (J)

EpiMAI Research Unity, Laboratory of Animal Health, Anses-National Veterinary School of Alfort, 7 Av. du Général de Gaulle, 94700, Maisons-Alfort, France.

Sébastien Gallien (S)

Department of Infectious Diseases, Tick-Borne Diseases Reference Center of Paris and the Northern Region, Centre Hospitalier Intercommunal de Villeneuve-Saint-Georges, 40 Allée de La Source, 94190, Villeneuve-Saint-Georges, France.
DYNAMIC Research Unity, UPEC-Anses, 8 Rue du Général Sarrail, 94000, Créteil, France.
Department of Infectious Diseases, Tropical Medicine and Immunology, University Hospital Henri Mondor, 1 Rue Gustave Eiffel, 94000, Créteil, France.

Classifications MeSH