Long-term Follow-up of Patients With Lyme Disease: Longitudinal Analysis of Clinical and Quality-of-life Measures

Clin Infect Dis. 2016 Jun 15;62(12):1546-1551. doi: 10.1093/cid/ciw189. Epub 2016 Mar 29.


Background: Lyme disease is the most common vector-borne disease in the United States. Some patients report persistent or intermittent subjective symptoms of mild to moderate intensity after antibiotic treatment for Lyme disease. We sought to evaluate trends in clinical and quality-of-life (QOL) measures in a cohort of patients with Lyme disease enrolled in a natural history study at the National Institutes of Health from 2001-2014.

Methods: QOL was measured using the self-administered 36-item Short Form Health Survey (SF-36) during study follow-up. Primary outcomes included mean physical (PCS) and mental (MCS) health QOL composite scores and reporting long-term (≥2 years) symptoms, adjusted for Lyme disease stage and severity at diagnosis.

Results: Overall, 101 patients with an average follow-up time of 3.9 years (range, 0.5-11.3 years) were included. At first visit, overall mean QOL scores were below the US population mean for both PCS (45.6 ± 10.4) and MCS (47.3 ± 11.5) but increased to just above the national average after 3 years of follow-up for both PCS (50.7 ± 9.6) and MCS (50.1 ± 10.0). Baseline QOL scores were lowest in those with late disease (P < 0.01) but also increased by the end of follow-up to national averages. In multivariate analysis, the only factors significantly associated with long-term symptoms or lower QOL scores were other comorbidities unrelated to Lyme disease.

Conclusions: Comorbid conditions can play a role in the reporting of long-term symptoms and overall QOL of Lyme disease patients and should be considered in the evaluation of these patients.

Clinical trials registration: NCT00028080.

Keywords: Borrelia burgdorferi; Lyme disease; epidemiology; longitudinal analysis; quality of life.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, N.I.H., Intramural

MeSH terms

  • Adult
  • Borrelia burgdorferi
  • Child
  • Child, Preschool
  • Comorbidity
  • Female
  • Follow-Up Studies
  • Humans
  • Infant
  • Lyme Disease / epidemiology*
  • Male
  • Middle Aged
  • Quality of Life*

Associated data

  • ClinicalTrials.gov/NCT00028080