Summary
To our knowledge, this is the first study to explore factors which may contribute to a delay in diagnosis and treatment of Lyme disease. We identified distinct, potentially modifiable risk factors between onset of first Lyme disease symptoms and treatment. Targeting these drivers may reduce time to diagnosis and treatment and reduce the occurrence of late-stage Lyme disease complications.
Why was this study done?
Many Lyme disease patients are misdiagnosed, or diagnosis is delayed. However, prompt treatment can lead to rapid resolution of infection and prevent severe complications of later stages of infection.
This study was done to identify themes around belated diagnosis or treatment of Lyme disease. To do this, we used the General Model of Total Patient Delay (GMTPD), an analytical framework which describes the decisional processes and potential delays prior to treatment of an illness. It has been widely applied to cancer and myocardial infarction but has not previously been applied to Lyme disease.
The GMTPD model could provide critical understanding of the drivers of belated treatment in Lyme disease and inform strategies to reduce time to diagnosis and treatment and prevent late-stage Lyme disease complications.
How was this study done?
We conducted in depth telephone interviews of patients from Geisinger, a large, integrated health system in Pennsylvania, to gain insight into their experiences between onset of Lyme disease symptoms and treatment. The study was conducted in a well-defined sample of 26 participants who had both a Lyme disease diagnosis and a positive IgG western blot. To ensure variation in patient care experiences, we oversampled patients diagnosed outside of primary care and enrolled patients with and without late Lyme disease manifestations.
We asked participants about their experience from first Lyme disease symptoms to treatment and used a coding process to identify key themes representing the GMTPD stages: appraisal delay (symptom to recognition of illness); illness delay (inferring illness to deciding to seek help); behavioral delay (deciding to seek help to the act of seeking help); scheduling delay (seeking help to attending an appointment); and treatment delay (attending appointment to treatment).
What were the major findings?
The study identified potential knowledge gaps in Lyme disease among patients and medical professionals, including the appraisal delay themes of symptom misattribution, intermittent symptoms, and misperceptions about the necessity of a bull’s-eye rash. Health insurance status was another driver of illness and behavioral delays. Scheduling delay was not noted by participants, in part, because 10 of the 26 patients went to urgent care or emergency department settings. Misdiagnoses were more common in these settings, contributing to treatment delay.
The original interview guide did not include questions about how Lyme disease may affect work absenteeism/presenteeism or productivity. However, the detrimental impact of Lyme disease on the ability to work and fulfil caregiving roles emerged as a common theme among participants.
What is the impact of this work?
To our knowledge, this is the first study to explore factors which may contribute to a delay in diagnosis and treatment of Lyme disease. We identified distinct, potentially modifiable risk factors between onset of first Lyme disease symptoms and treatment. Strategies that target these obstacles may minimize time to treatment and reduce the occurrence of preventable complications which can include neurological manifestations, cardiac abnormalities, and arthritis.
This research was supported by:
This work was supported by the Steven & Alexandra Cohen Foundation. The Steven and Alexandra Cohen Foundation did not participate in data collection, analysis or the writing of this manuscript.
