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

Abstract

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.

Published by Oxford University Press for the Infectious Diseases Society of America 2016. This work is written by (a) US Government employee(s) and is in the public domain in the US.

Figures

Figure 1.

Change in mean physical component summary by follow-up time period and stage of Lyme disease at diagnosis (n = 60*). *Sample sizes: early localized/early disseminated/late disseminated—baseline (19/24/13), 1 month (2/9/5), 3 months (5/12/3), 6 months (6/12/12), 12 months (14/19/7), 24 months (11/16/8), 36 months (4/15/10), >36 months (6/14/4).

Figure 2.

Change in mean mental component summary by follow-up time period and stage of Lyme disease at diagnosis (n = 60*). *Sample sizes: early localized/early disseminated/late disseminated—baseline (19/24/13), 1 month (2/9/5), 3 months (5/12/3), 6 months (6/12/12), 12 months (14/19/7), 24 months (11/16/8), 36 months (4/15/10), >36 months (6/14/4).

Figure 3.

Change in mean physical component summary in a cohort of Lyme disease patients by follow-up time period and comorbidity at baseline (n = 60*). *Sample sizes: comorbidity/no comorbidity—baseline (33/23), 1 month (9/7), 3 months (11/9), 6 months (18/12), 12 months (26/14), 24 months (19/16), 36 months (19/10), >36 months (11/13).