Characterizing Post-treatment Lyme Disease Syndrome: A Mixed Methods Study of Patients at a Lyme Disease Clinic in Rhode Island.

Background: Mixed quantitative and qualitative research methods may be useful for characterizing the experiences of patients with post-treatment Lyme disease syndrome.

Methods: 15 participants completed demographic and screening questions, surveys assessing quality of life, fatigue, pain, cognitive functioning, and other patient- reported outcomes, a semi-structured in-depth interview, and consented to a Lyme-related medical chart review.

Results: Participants reported mild to moderate symptoms and functional impairments on patient-reported outcome surveys and in-depth interviews. Participants reported on a number of management strategies that they found more or less effective in managing their symptoms. Participants endorsed the need for better clinical assessment of symptom patterns over time, greater Lyme-related education for providers, more holistic approaches to diagnosis and care, and the desire to participate in Lyme-focused support groups.

Conclusions: Overall, participants desired a more holistic approach to diagnosis, symptom assessment, and symptom management. Recommendations for future research and clinical considerations are discussed.