Original Research
The Journey of Adult Patients with Lyme Disease in the United States: A Qualitative Interview Study and Patient-Reported, Health-Related Quality-of-Life Assessment
This study explores the complex journey of adult patients with Lyme disease (LD) in the US, providing qualitative insights into their signs, symptoms, and the significant impacts on health-related quality of life (HRQOL) from diagnosis through treatment. Understanding these experiences is crucial for enhancing awareness and prevention.
Executive Impact Snapshot
Key metrics reveal the substantial and multifaceted burden of Lyme disease on individuals' health and daily lives.
476,000
Annual Cases Diagnosed in US
5%
Patients with Persistent Symptoms
84%
Participants Reporting Emotional Impact
36%
Participants Reporting Physical Impact
Deep Analysis & Enterprise Applications
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Abstract Highlights
Methodology Flow
Key Findings
Implications & Discussion
476,000
Estimated annual cases of Lyme disease in the USA
Lyme disease (LD) is the most common tick-borne illness in the USA, with an estimated 476,000 cases diagnosed and treated annually. Patients experience diverse symptoms and impacts on health-related quality of life (HRQOL).
76%
Participants whose symptoms resolved after antibiotic therapy
Most participants (76%) stated their symptoms resolved after antibiotic therapy; however, nearly a quarter (24%) reported persistent symptoms. Continued emotional impacts were reported by 60% of participants even after treatment.
Enterprise Process Flow
In-depth, one-on-one, semi-structured interviews
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US adults ≥18 with physician-diagnosed LD in 2023
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EQ-5D administered, patient journey map developed
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Interview transcripts analyzed via inductive/deductive coding
| Domain | Pre-diagnosis (Mean Score) | At diagnosis (Mean Score) | At interview (Mean Score) |
|---|---|---|---|
| Mobility (All) | 1.04 | 1.88 | 1.12 |
| Self-care (All) | 1.04 | 1.68 | 1 |
| Usual activities (All) | 1.08 | 2.32 | 1.28 |
| Pain/discomfort (All) | 1.32 | 2.6 | 1.6 |
| Anxiety/depression (All) | 1.64 | 3.08 | 1.96 |
| Visual Analogue Scale (All) | 88.3 | 56.1 | 83.6 |
EQ-5D scores highlight significant deterioration in quality of life at diagnosis across all domains, with partial recovery by the time of interview. Anxiety/depression, pain/discomfort, and usual activities were most affected.
Patient Experience Spotlight
"On a regular day, I feel like I am still, um, a bit fatigued and I do experience the brain fog and those are my main two things right now. Um, yeah, mainly the fatigue and brain fog."
— 48-year-old woman with disseminated LD, describing persistent symptoms post-treatment.
The patient journey with LD is highly varied and individualised, highlighting the range of signs, symptoms, physical and emotional impacts. Understanding this complex burden is crucial for enhanced awareness and prevention measures.
Most participants (72%) were from low-incidence states, yet only two reported initial misdiagnosis. This suggests provider inexperience with LD was not a common issue in this sample, although further education for physicians in low-incidence areas is still recommended.
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