This recent Canadian study articulates many of the concerns that Lyme patients have, including the concern that mothers have regarding the transmission of Lyme disease to their children.1 Using a qualitative approach, the authors identify several patient centered research priorities.
Participants in the study expressed concerns about transmission of Lyme disease not only during pregnancy and childbirth, but also through breastfeeding and sexual transmission. They articulate many of the knowledge gaps regarding maternal-fetal transmission that require further research. These include assessing outcomes during pregnancy and long term follow-up including outcomes of mothers and their children.
This qualitative approach revealed that participants had concerns that relate to pregnancy and to the population at large. These included general concerns about testing and treatment protocols for Lyme disease, and concerns about the lack of routine testing for Lyme disease during pregnancy and specific treatment protocols for pregnant mothers.
Participants also identified the need for improved training and education of healthcare professionals and better collaboration between providers, including collaborations with naturopaths. They also articulated their interest in participating in future research and explored many of the barriers and enabling factors that might influence participation.
Participants identified a variety of research questions that would be important to address, and these fell within five priority areas: transmission, testing, treatment, disease presentation, and education of healthcare practitioners. Participants additionally described factors which would enhance or hinder their participation in future research and made suggestions for recruitment strategies.
These well articulated concerns and recommendations highlight the important role of patient engagement in research, beginning at the earliest stages of research. This article also echoes concerns that many patients express regarding testing, treatment and healthcare barriers they encounter when seeking effective healthcare for Lyme disease in Canada.
Thank you to the researchers and participants of this study for bringing much needed attention to the issue of maternal-fetal transmission of Lyme disease and for helping set the stage for future research in this area.
Omar A, Grenier LN, Marquez O, Faber S, Darling EK (2024) Perinatal transmission of Lyme disease: A qualitative study investigating the research priorities of patients with Lyme disease in pregnancy. PLoS ONE 19(2): e0294265. https://doi.org/10.1371/journal.pone.0294265
- Omar A, Grenier LN, Marquez O, Faber S, Darling EK (2024) Perinatal transmission of Lyme disease: A qualitative study investigating the research priorities of patients with Lyme disease in pregnancy. PLoS ONE 19(2): e0294265. https://doi.org/10.1371/journal.pone.0294265