Understanding Lyme Disease Information for Children, Youth, and Parents: A Content and Thematic Analysis of Publicly Available Websites

Objectives Lyme disease (LD) is the most common tick-borne disease in Canada.[1] While early symptoms of LD (eg, bulls-eye rash) are relatively well-known to the lay public, awareness of other presentations may be less appreciated. Our previous research found that parents of children with LA were fearful about a LD diagnosis and were not aware that arthritis could be a manifestation of LD.[2] The accessibility and scope of publicly available information may contribute to this finding. Our objectives were to identify prominent online sources of LD information and determine (1) the webpage readability (2) the availability of LA, parent, and pediatric-specific information, and (3) overall messaging about LD.

Methods An incognito Google search was performed using relevant search terms pertaining to LD and LA (top 20 sites from each search were reviewed, duplicates removed). Flesch-Kincaid Grade Level (FKGL) and Flesch-Kincaid Reading Ease Scores (FRES) (score 60-70 = grade 8-9) were assessed for each site. A content analysis of the government and hospital-based (GH) websites was conducted to evaluate the availability of information on LA, focusing on information tailored to parents and children. The remaining websites (eg, non-profit foundations, for-profit organizations, etc.) were assessed to identify alignment with the reference standard of the Public Health Agency of Canada, and where non-alignment occurred (conflicting with or absent from PHAC), qualitative analysis was performed to identify themes in the information presented.

Results 82 websites were reviewed. 22% had a FKGL < grade 8, 29% grade 8-12, and 49% > grade 12. One-third (32%) had a FRES ≥ 60. Among 49 GH websites, 17 (35%) specified which joints may become painful in LD. Of these 17, only 8 (47%) specifically used the term LA as a manifestation of LD, and only 4 websites contained information on the clinical course and outcomes of LA. 21/49 (43%) websites had parent-specific information, while only 2/49 (4%) had pediatric-targeted information. Qualitative analysis of the remaining 33 websites included focus on broad symptomology related to LD, negative outcomes, long term symptoms, and uncertainty surrounding LD testing.

Conclusion The reading level of online information may hinder public comprehension. There are gaps in specific information presented about LA overall and in information catering to children, youth, and parents. This information will guide the development of evidence-based knowledge translation tools, as well as inform healthcare providers of the scope of online information their patients may encounter.

References [1.] Gasmi S. Can Commun Dis Rep 2022;48:219-27. [2.] Laltoo R. [Abstract] J Rheumatol 2025;52:72.