The Journey of Adult Patients with Lyme Disease in the United States: A Qualitative Interview Study and Patient-Reported, Health-Related Quality-of-Life Assessment

INTRODUCTION: Lyme disease (LD) is the most common tick-borne illness in the USA, with an estimated 476,000 cases diagnosed and treated annually. Common signs, symptoms, and manifestations of LD are well described; however, there is limited qualitative understanding of the signs and symptoms patients experience during their illness and the associated impacts patients endure along the way. Thus, we aimed to explore the patient journey and experience with LD, including patient-reported signs and symptoms and impacts to health-related quality of life (HRQOL). No a priori hypotheses were evaluated. METHODS: In-depth, one-on-one, semi-structured interviews were conducted with US adults aged ≥ 18 years who had physician-diagnosed LD in 2023 to explore their experience with LD diagnosis, management, and treatment. The EQ-5D (a standardised HRQOL measure) was administered, and a patient journey map was developed. Interview transcripts were analysed via inductive and deductive coding, using an experiential, realist approach. RESULTS: Twenty-five participants with LD were interviewed (female, 13/25, 52%; male, 12/25, 48%), including those classified as having localised (10/25, 40%), disseminated (10/25, 40%), and indeterminate (5/25, 20%) LD. Participants reported various impacts at diagnosis, such as fear and anxiety, difficulty exercising, needing time off work, and spending increased time indoors. Most participants (19/25, 76%) stated that their symptoms resolved after antibiotic therapy; however, nearly a quarter (6/25, 24%) reported persistent symptoms. Most (15/25, 60%) reported continued emotional impacts after treatment, including fear of future LD infection, fear of the outdoors, and LD-related anxiety. As reported, all EQ-5D domains were worst at diagnosis, but most participants returned to their pre-LD score by the time of the interview. CONCLUSION: The patient journey with LD is highly varied and individualised, and this study highlights the range of signs, symptoms, physical and emotional impacts that many individuals with LD experience throughout their journey.