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Pediatric Lyme disease: systematic assessment of post-treatment symptoms and quality of life

Pediatric Research volume 95, pages 174–181 (2024)Cite this article

Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.

Impact

  • 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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Data availability

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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Funding

Funding

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.).

Author information

Authors and Affiliations

  1. Divisions of Psychology and Behavioral Health, Washington, DC, USA

    Maureen Monaghan

  2. Department of Pediatrics, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA

    Maureen Monaghan, Marcin Gierdalski, James E. Bost & Roberta L. DeBiasi

  3. Center for Translational Research, Children’s Research Institute, Washington, DC, USA

    Stephanie Norman, Marcin Gierdalski, James E. Bost & Roberta L. DeBiasi

  4. Division of Biostatistics and Study Methodology, Childrens National Research Institute, Washington, DC, USA

    Marcin Gierdalski & James E. Bost

  5. Laboratory of Clinical Immunology and Microbiology, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA

    Adriana Marques

  6. Division of Pediatric Infectious Diseases, Children’s National Hospital, Washington, DC, USA

    Roberta L. DeBiasi

  7. Department of Microbiology, Immunology and Tropical Medicine, The George Washington University School of Medicine, Washington, DC, USA

    Roberta L. DeBiasi

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  1. Maureen Monaghan
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Contributions

M.M. and R.D. made substantial contributions to the conception and design of the study, contributed to the analysis and interpretation of data, drafted the article, and revised it critically for important intellectual content. A.M. made substantial contributions to the conception and design of the study, contributed to the analysis and interpretation of data, drafted the article, and revised the article critically for important intellectual content. S.N. made substantial contributions to the acquisition of data and analysis of data, drafted the article, and critically reviewed the manuscript. M.G. and J.B. made substantial contributions to the analysis and interpretation of data and revised the article critically for important intellectual content. All authors provided final approval of the submitted manuscript.

Corresponding author

Correspondence to Roberta L. DeBiasi.

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Competing interests

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.

Ethics approval and consent to participate

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 95, 174–181 (2024). https://doi.org/10.1038/s41390-023-02577-3

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