Feelings and care pathways of patients assessed for suspected Lyme borreliosis in the French Amazon: a qualitative study

Abstract

Abstract Background and objectives: Subjective nonspecific symptoms can persist after well-treated Lyme disease (LD) (known as post-treatment Lyme disease syndrome). On the other hand, a link between borreliosis andso-called chronic Lyme disease (CLD) has never been demonstrated, while approximately80% of patients with suspected LD suffer from another disease. However, these patients are truly suffering and wonder for an explanation for their pain. The aim of this study was to focus for the first time onthe care pathway of patients assessed for a suspected LD in French Guiana. Methods: We performed a qualitative study with semiconducted interviews. All patients assessed for a suspicion of LD at the Hospital of Cayenne could be included, regardless of whether the diagnosis was confirmed. Results: Nine patients were interviewed. Four major themes were highlighted after analysis: a long pathway to a diagnosis, an opposition between patients and the healthcare system, a lonely medical journey, and a negative impact of the disease on quality of life. Self-diagnosed CLD is still a challenging reason forconsultation, supported by the over mediatization of LD and an opposition with the healthcare system. This opposition is highlighted in French Guiana, where no LD is described to date and whereaccess to healthcare is different as in mainland France. Conclusion: Patients with nonspecific symptoms attributed to LD are truly suffering and are asking for a listening ear. An empathic but rigorous approach is needed to manage these patients, to find a possible differential diagnosis and to improve patient care.