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

Sara E Vargas; Meghan McCarthy; Matthew Boudreau; Dylan Canfield; Rebecca Reece; Timothy Flanigan

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

R I Med J (2013). 2021 Apr 1;104(3):53-57.

Authors

Sara E Vargas¹, Meghan McCarthy², Matthew Boudreau², Dylan Canfield², Rebecca Reece³, Timothy Flanigan⁴

Affiliations

¹ Research Scientist, Center for Behavioral and Preventive Medicine, The Miriam Hospital, Providence, RI; Assistant Professor (Research), Department of Psychiatry and Human Behavior, Warren Alpert Medical School of Brown University, Providence, RI.
² Research Assistant, Division of Infectious Disease, The Miriam Hospital, Providence, RI.
³ Infectious Disease Fellow, Rhode Island Hospital and The Miriam Hospital, Providence, RI; Assistant Professor of Medicine, Warren Alpert Medical School of Brown University, Providence, RI.
⁴ Infectious Disease Physician, Rhode Island Hospital and The Miriam Hospital, Providence, RI; Dean's Professor of Medical Science, Professor of Medicine, and Professor of Health Services, Policy, and Practice, Warren Alpert Medical School of Brown University, Providence, RI.

PMID: 33789412

Abstract

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.

Keywords: patient-reported outcomes; Lyme disease; chronic disease; quality of life.

MeSH terms

Adult
Chronic Pain*
Fatigue / epidemiology
Fatigue / etiology
Female
Humans
Lyme Disease* / diagnosis
Lyme Disease* / drug therapy
Lyme Disease* / epidemiology
Male
Quality of Life
Rhode Island / epidemiology