Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study

Abstract

ObjectiveFor many individuals with Lyme disease, prompt treatment leads to rapid resolution of infection. However, severe complications can occur if treatment is delayed. Our objective was to identify themes around belated diagnosis or treatment of Lyme disease using the General Model of Total Patient Delay (GMTPD).DesignWe conducted a qualitative interview study using indepth telephone interviews.SettingParticipants were patients from a large, integrated health system in the state of Pennsylvania, USA.ParticipantsThere were 26 participants. Participants had to have a diagnosis of Lyme disease between 2014 and 2017 and a positive IgG western blot. We used a stratified purposeful sampling design to identify patients with and without late Lyme disease manifestations. To ensure variation in care experiences, we oversampled patients diagnosed outside of primary care.Outcome measuresWe asked participants about their experience from first Lyme disease symptoms to treatment. We applied an iterative coding process to identify key themes and then synthesised codes into higher order codes representing the GMTPD stages: appraisal delay (symptom to recognition of illness); illness delay (inferring illness to deciding to seek help); behavioural 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).ResultsAppraisal delay themes included symptom misattribution, intermittent symptoms and misperceptions about the necessity of a bull’s-eye rash. Health insurance status was a driver of illness and behavioural 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.ConclusionOur study identified potentially modifiable risk factors for belated treatment. Targeting these risk factors may minimise time to treatment and reduce the occurrence of preventable complications.

Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis

“…While delayed diagnosis appears to be common in those with chronic Lyme disease, the extent of the problem for the full disease spectrum is unknown. However, some researchers suggest that delayed diagnosis may occur in as many as 40% of cases [3].…”

“…The Centers for Disease Control and Prevention (CDC) estimates that 300,000 new cases of Lyme disease occur annually [1]. Although most patients who are diagnosed and treated early are restored to health, treatment failures ranging from 10% to 35% have been reported, and many patients are not diagnosed until later in the disease when treatment success is much harder to achieve [2,3,4,5,6,7,8,9]. Compared to other diseases, very little research has been conducted on how best to treat patients who do not respond to short-term treatment approaches [10].…”

Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease

“…One recent study has shown that the presence of pre-existing co-morbidities in Lyme disease was predictive of long-term symptoms and lower quality of life (39), similar to other disease settings (40,41). Delays in diagnosis and initiation of appropriate treatment, which importantly may be driven by patient health insurance status (42), have also been shown to increase risk (31,32). Diagnostic delays may also be compounded in some initially misdiagnosed patients by subsequent exposure to inappropriate or ineffective treatments (15,43).…”

“…While it is unknown whether corticosteroid exposure during acute infection, often prescribed for associated facial palsies, may affect resolution of systemic symptoms, it has been shown to be associated with worse long-term facial function outcomes (44,45). Although awareness of Lyme disease has increased in recent decades, the wide range of clinical heterogeneity at presentation and the limited sensitivity of the two-tier test mean that misdiagnosis and delays in diagnosis still occur with some frequency in the community practice of medicine (42,43).…”

“…Finally, only a handful of qualitative studies have been conducted which address the lived experience of patients with persistent symptoms (42,153,(188)(189)(190). However, it is evident from this small body of literature that a key component of this experience is an often complex and protracted interaction with the health care system.…”