Lyme disease is common among children and adolescents. Antibiotic treatment is effective, yet some patients report persistent symptoms following treatment, with or without functional impairment. This study characterized long-term outcome of pediatric patients with Lyme disease and evaluated the case definition of post-treatment Lyme disease (PTLD) syndrome.
The sample included 102 children with confirmed Lyme disease diagnosed 6 months—10 years prior to enrollment (M = 2.0 years). Lyme diagnosis and treatment information was extracted from the electronic health record; parent report identified presence, duration, and impact of symptoms after treatment. Participants completed validated questionnaires assessing health-related quality of life, physical mobility, fatigue, pain, and cognitive impact.
Most parents reported their child’s symptoms resolved completely, although time to full resolution varied. Twenty-two parents (22%) indicated their child had at least one persistent symptom >6 months post-treatment, 13 without functional impairment (PTLD symptoms) and 9 with functional impairment (PTLD syndrome). Children with PTLD syndrome had lower parent-reported Physical Summary scores and greater likelihood of elevated fatigue.
In the current study, most children with Lyme disease experienced full resolution of symptoms, including those who initially met PTLD syndrome criteria. Effective communication about recovery rates and common symptoms that may persist post-treatment is needed.
The majority of pediatric patients treated for all stages of Lyme disease reported full resolution of symptoms within 6 months.
22% of pediatric patients reported one or more symptom persisting >6 months, 9% with and 13% without accompanying functional impairment.
Effective communication with families about recovery rates and common symptoms that may persist post-treatment of Lyme disease is needed.
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The data collected for the purposes of this study and analyzed during the current study are available from the corresponding author on reasonable request.
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This work was supported by Clinical and Translational Science Institute at Children’s National (CTSI-CN) [Grant number UL1TR001876-05 and UL1TR001876-02S1] (R.D., M.M., J.B., M.G., S.N.) and the Intramural Research Program of the National Institute of Allergy and Infectious Diseases, National Institutes of Health (A.M.).
M.M. is currently employed by the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. All data for this manuscript was collected prior to her employment at the National Institutes of Health. A.M. is employed by the National Institute of Allergy and Infectious Diseases, National Institutes of Health; A.M. has a patent (US 8,926,989) and serves as an unpaid scientific advisor to the Global Lyme Alliance and the American Lyme Disease Foundation. R.L.D., S.N., M.G., and J.B. declare no conflicts of interest.
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All participating parents and adult patients aged 18 years and up provided consent to participate in the study; adolescents ages 10 and up provided assent to participate in the study.
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Monaghan, M., Norman, S., Gierdalski, M. et al. Pediatric Lyme disease: systematic assessment of post-treatment symptoms and quality of life. Pediatr Res (2023). https://doi.org/10.1038/s41390-023-02577-3