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

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.