Characteristics and patient pathways of Lyme disease patients: A retrospective analysis of hospital episode data in England and Wales (1998-2015)

Background: Lyme disease is a tick-borne disease of increasing global importance. There is scant information on Lyme disease patient demographics in England and Wales, and how they interact with the National Health Service (NHS). Our aims were to explore the demographic characteristics of Lyme disease patients within the Hospital Episode Statistics (HES) and Patient Episode Database for Wales (PEDW), and to describe patient pathways. Methods: Data from 1st January 1998 to 31st December 2015 was retrieved from the two administrative hospital datasets (HES and PEDW), based on patients coded with Lyme disease. Information was collected on demographic characteristics, home address and case management. Incidence rates were calculated, and demographics compared to the national population. Results: Within HES and PEDW, 2361 patients were coded with Lyme disease. There was a significant increase (p < 0.01) in incidence from 0.08 cases/100,000 in 1998, to 0.53 cases/100,000 in 2015. There was a bimodal age distribution, patients were predominantly female, white and from areas of low deprivation. New cases peaked annually in August, with higher incidence rates in southern central and western England. Within hospital admission data (n = 2066), most cases were either referred from primary care (28.8%, n = 596) or admitted via accident and emergency (A&E) (29.5%, n = 610). This population entering secondary care through A&E suggest a poor understanding of the recommended care pathways for symptoms related to Lyme disease by the general population. Conclusions: These data can be used to inform future investigations into Lyme disease burden, and patient management within the NHS. They provide demographic information for clinicians to target public health messaging or interventions.