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.

Characterizing the Symptoms of Patients with Persistent Post-Treatment Lyme Symptoms: A Survey of Patients at a Lyme Disease Clinic in Rhode Island.

BACKGROUND: 10-20% of individuals diagnosed with Lyme disease develop chronic symptoms after antibiotic treatment. METHODS: A convenience sample of adults with self- reported, persistent post-Lyme treatment symptoms seeking treatment at the Lifespan Lyme Disease Center in Rhode Island completed a demographic and medical survey, the Patient Reported Outcomes Measurement Information System (PROMIS)-29 v2.0, and other short-form PROMIS measures of cognitive function, sleep disturbance, and fatigue. RESULTS: Compared to average standardized scale scores (T=50; SD=10), participants had mild impairments in physical (T=41) and social (T=42) functioning, mild symptoms of depression (T=56), anxiety (T=60), and sleep disturbance (T=57), and moderate pain interference (T=62), and fatigue (T=65). Participants reported greater symptoms than some other clinical samples including those with cancer and chronic pain. Post-hoc analyses revealed that women reported higher levels of fatigue than men. CONCLUSIONS: People with persistent post-Lyme treatment symptoms report debilitating symptoms and functional impairments which must be considered in clinical care.