Perinatal transmission of Lyme disease: A qualitative study investigating the research priorities of patients with Lyme disease in pregnancy

Abstract

Introduction Lyme disease is one of the most prevalent vector-borne disease in North America, yet its implications during pregnancy are poorly understood. Our knowledge of perinatal transmission of Lyme disease is limited due to the lack of robust epidemiological studies and longitudinal follow-up. Objectives This study aimed to understand the research priorities of people who have experienced Lyme disease in pregnancy and the feasibility of recruiting this population for future studies on perinatal transmission of Lyme disease. We also sought to understand the barriers and enablers to participating in research on perinatal transmission of Lyme disease. Methods We conducted a qualitative study using focus groups and interviews with people who had experienced Lyme disease during pregnancy. English speaking participants were recruited through an online survey. There was no geographic restriction on participation. The focus groups and the interview were recorded and transcribed. Data were analyzed using interpretive content analysis. Results Twenty people participated in four semi-structured focus groups and one semi-structured individual interview. The majority of participants were from North America. Participants’ research priorities fell into five categories: transmission, testing, treatment, disease presentation, and education. All study participants expressed interest in future participation in research on Lyme disease in pregnancy and highlighted barriers and enablers to participation that could be addressed to facilitate future study recruitment. Conclusion The research priorities identified in this research would be well addressed through prospective research. People who experience Lyme disease in pregnancy are invested in continued research into perinatal transmission of Lyme disease.