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

Maureen Monaghan; Stephanie Norman; Marcin Gierdalski; Adriana Marques; James E Bost; Roberta L DeBiasi

doi:10.1038/s41390-023-02577-3

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

Pediatr Res. 2024 Jan;95(1):174-181. doi: 10.1038/s41390-023-02577-3. Epub 2023 Mar 30.

Authors

Maureen Monaghan^{1

2}, Stephanie Norman³, Marcin Gierdalski^{2

3

4}, Adriana Marques⁵, James E Bost^{2

3

4}, Roberta L DeBiasi^{6

7

8

9}

Affiliations

¹ Divisions of Psychology and Behavioral Health, Washington, DC, USA.
² Department of Pediatrics, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA.
³ Center for Translational Research, Children's Research Institute, Washington, DC, USA.
⁴ Division of Biostatistics and Study Methodology, Childrens National Research Institute, Washington, DC, USA.
⁵ Laboratory of Clinical Immunology and Microbiology, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA.
⁶ Department of Pediatrics, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA. rdebiasi@childrensnational.org.
⁷ Center for Translational Research, Children's Research Institute, Washington, DC, USA. rdebiasi@childrensnational.org.
⁸ Division of Pediatric Infectious Diseases, Children's National Hospital, Washington, DC, USA. rdebiasi@childrensnational.org.
⁹ Department of Microbiology, Immunology and Tropical Medicine, The George Washington University School of Medicine, Washington, DC, USA. rdebiasi@childrensnational.org.

PMID: 36997691
DOI: 10.1038/s41390-023-02577-3

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.

MeSH terms

Adolescent
Anti-Bacterial Agents / therapeutic use
Child
Fatigue / drug therapy
Humans
Lyme Disease* / diagnosis
Lyme Disease* / drug therapy
Pain / drug therapy
Quality of Life*

Substances

Anti-Bacterial Agents