Perceptions, Representations, and Experiences of Patients Presenting Nonspecific Symptoms in the Context of Suspected Lyme Borreliosis

Microorganisms

Christian Rabaud¹  Pauline Caraux-Paz²  Sarah Covasso²  Alice Raffetin²  Steve Nguala²  Giulia Paoletti³  Aude Barquin⁴  Henri Partouche⁴  Olivier Chassany⁵ 

[1] Department of Infectious Diseases, Tick-Borne Diseases Reference Centre, East Region, CHRU Nancy, Bâtiment Philippe Canton, Hôpitaux de Brabois, Allée du Morvan, 54500 Vandoeuvre les Nancy, France;Department of Infectious Diseases, Tick-Borne Diseases Reference Centre, North Region, CH Villeneuve Saint Georges, 40 Allée de la Source, 94190 Villeneuve-Saint-Georges, France;Department of Psychiatry, Tick-Borne Diseases Reference Centre, Île-de-France/Hauts-de-France, CH Villeneuve Saint Georges, 40 Allée de la Source, 94190 Villeneuve-Saint-Georges, France;Département de Médecine Générale, Paris University, Site Cochin 27, Rue du Fbg Saint-Jacques, CEDEX 14, 75679 Paris, France;Health Economics Clinical Trial Unit (URC-ECO), Hôpital Hotel-Dieu, AP-HP, 1 Place du Parvis Notre Dame, 75004 Paris, France;

关键词: Lyme borreliosis;    perceptions;    representations;    experiences;    qualitative study;    grounded theory;   

DOI  :  10.3390/microorganisms9071515

来源: DOAJ

【 摘 要 】

Background: Some subjective symptoms may be reported at all stages of Lyme borreliosis (LB) and may persist for several months after treatment. Nonspecific symptoms without any objective manifestation of LB are sometimes attributed by patients to a possible tick bite. The aim of our study was to explore the perceptions, representations, and experiences that these patients had of their disease and care paths. Methods: We performed a qualitative study through individual interviews (October 2017–May 2018), based on grounded theory, following the COREQ checklist. A balanced sample of patients with diverse profiles was recruited at consultations with general practitioners and infectious disease physicians. Results: Twelve patients were interviewed. Data saturation was reached at the twelfth interview. For codes, 293 were identified, and classified into 5 themes: (1) the experience of disabling nonspecific symptoms, especially pain, causing confusion and fear, (2) long and difficult care paths for the majority of the patients, experienced as an obstacle course, (3) a break with the previous state of health, causing a negative impact on every sphere of the patient’s life, (4) empowerment of the patients and the self-management of their disease, and (5) the strong expression of a desire for change, with better listening, greater recognition of the symptoms, and simpler care paths. Conclusions: This study allows for the understanding of a patient’s behaviours and the obstacles encountered, the way they are perceived, and the necessary solutions. The patients’ expectations identified here could help physicians better understand the doctor–patient relationship in these complex management situations, which would reduce the burden of the disease. The current development of specialised reference centres could help meet the patients’ demands and those of family physicians.

【 授权许可】

Unknown