Biographical Approach to Patients Consulting for Presumed Lyme Disease: A Contribution to the Understanding of Patient Pathways in Symptom-Based Diseases

Abstract

Media coverage of Lyme disease (LD) has led to an increase in consultations for presumed LD in Europe. However, LD is confirmed in only 10-20% of patients, with a significant number remaining in a diagnostic dead-end. The objective of our study was to understand the genesis of the LD hypothesis in care pathways. In 2019, 30 patients from a prospective cohort consulting in the infectious diseases department at University Hospital in Marseille for presumed LD were recruited for semi-structured interviews. The inclusion criteria were: suffering from subjective symptoms for 6 months, no clinical or paraclinical argument suggesting current LD. The patients’ medical trajectories were collected using a biographical approach. A majority of participants were convinced they had LD despite the lack of medical evidence and the scepticism of their referring GP. The diagnosis of Lyme disease was primarily triggered by identification with clinical stories circulating in the media. Most of participants had conducted the diagnostic investigation themselves. Diagnostic wandering in the diagnostic process suggests a failure of modern medicine to propose solutions for medically unexplained symptoms. Clinicians should systematically explore patients’ etiologic representations in a patient-centred care approach.