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Harvard Health Publishing, Harvard Medical School

How We Approached Our Work

Before we created a single word of content, we wanted to better understand the current Lyme disease landscape. What information was already available for people with Lyme disease? How well does the public understand Lyme disease? And, importantly, what is the experience of people with Lyme disease? Here’s how we tried to lay this groundwork.

Lyme Disease Website Gap Analysis

We analyzed 24 websites geared to Lyme disease patients and the public. Our aims were to learn what information Lyme disease websites do and do not offer, how they present that information, and to identify gaps in topic areas. This helped us decide to:

  • Offer practical, actionable support.

  • Keep the site patient centered.

  • Provide resources for managing life with Lyme disease.

  • Outline what to expect in various stages of illness and recovery.

  • Explicitly address topics related to improving quality of life.

  • Address practical topics such as returning to work after an extended illness.

  • Present clear explanations of disagreement within the medical community.

  • Acknowledge questions that remain unanswered.

Lyme Disease Awareness and Prevention Survey

In March 2021, we conducted an online survey to gauge what the public does and does not know about Lyme disease and ways to prevent it. We also asked questions to see whether they act on that knowledge.

We received 4,099 responses to our survey.

Key findings:

  • 34.8% of respondents don’t know if Lyme disease is common where they live

  • 16.2% aren’t sure if Lyme is contagious

  • 39.6% don’t know if you can get Lyme disease more than once

  • 11.5% don’t know how to remove a tick

  • 14.4% think they do know how to remove a tick, but selected methods that are not recommended, such as applying Vaseline, nail polish remover, or alcohol

  • 48.1% think that if you are bitten by a tick, you should only contact your doctor if you develop a rash or other symptoms

  • 22.8% don’t know what types of rash can be associated with Lyme disease

  • 82.8% do not know to treat clothing/gear with permethrin

  • 37.4% could not identify other diseases that ticks spread

Our survey also revealed that no more than 21% of our audience was aware of, or engaging in, the following relatively low-effort prevention measures:

  • Performing daily tick checks

  • Staying on paved paths/out of wooded areas

  • Using repellents containing DEET or picaridin

  • Showering after spending time outdoors.

This survey highlighted the need to increase awareness of Lyme disease and other tick-borne diseases. It also underscored the importance of promoting the consistent use of straightforward safety measures to help prevent tick bites.

Lyme Disease Patient Experience Survey

We wanted to hear directly from Lyme disease patients about their experiences, the information that might help them better navigate their illness, and the effects Lyme disease had on their lives. To capture this information, we launched an online survey in June 2021. The survey was open to adults living in the U.S. who had been diagnosed with Lyme disease by a medical professional.

We asked more than 160 questions on a range of topics from diagnosis and symptoms to quality of life and information resources. We wanted to understand the range of Lyme disease experiences and learn about the ways in which Lyme disease may impact a person’s health, relationships, employment, and day-to-day functioning.

A total of 406 qualified respondents participated in our survey. 78.3% were female and 20.0% were male. The average age of our respondents was 50 years; the oldest respondent was 85 and the youngest was 19. We received a range of responses, from those who had a brief, straightforward experience with Lyme disease, to others whose illness took a longer, less linear path.

A key finding from our survey:

  • 93% of respondents said Lyme disease negatively impacted their quality of life.

Aspects of life impacted by Lyme disease included:

  • Roles and responsibilities within the family

  • Relationships with friends and family

  • Physical pain and discomfort

  • Moods, emotions, and state of mind

  • Self-perception

  • Identity and life trajectory

The patient experience is central to our work and guided the questions, concerns, and topics we addressed. With their permission, we share some of the responses to help illustrate elements of the Lyme disease experience.