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

Abstract

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.

A descriptive epidemiological study of the incidence of newly diagnosed Lyme disease cases in a UK primary care cohort, 1998–2016

“…Wales is the only nation that does not have an obvious increase in cases, which may be due to, at least in part, a low number of cases (n = 165) and registered THIN practices in Wales. The peak number of cases we observed in summer months is consistent with other studies [7,10,[35][36][37]. This peak occurs slightly earlier in England than in Scotland.…”

“…There is building evidence that areas with higher Lyme disease incidence are likely to be less deprived [10,37,41,42]. The current analysis was able to show that socio-economic and rural-urban status were significantly and independently associated with Lyme disease incidence.…”

“…Analysis of Lyme disease patient demographics have shown predominance in both sexes in a variety health care settings in the UK [7,9,10,36,37,39]. In comparison to other national primary care datasets, Switzerland and France have no statistical difference between sexes, but numerically more women [13,29].…”

“…Finally, the geographical resolution of THIN only allows us to carry out analysis to the level of the constituent nations of the UK, so analysis of the spatial distribution of incidence with this dataset is not possible. Previous research in the UK has shown clear clustering of cases both from laboratory confirmed cases [7,9,36], and hospital admissions [37,39]. The largest number of identified cases will be in primary care, because not all cases require diagnostics or hospital admissions.…”

Emergence of Lyme disease on treeless islands in Scotland, UK

“…However, the recent emergence of LD on treeless islands in Scotland (6) has challenged our current understanding of the associations between habitat and LD incidence for this vector-borne disease. Within the UK, LD is an emerging zoonosis with the highest incidence reported from the Highland region of Scotland (7,8). Some islands in the Highland region with no woodland cover have a LD incidence twenty times the national average (119 cases/100,000 vs 3.2 cases/100,000) (6).…”