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 patients and the public. Our aims were to learn what information Lyme 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.
Use the terms “long-haul Lyme disease” and “Lyme long haulers” to welcome all Lyme disease patients with persistent symptoms.
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.
34.8% of respondents don’t know if Lyme is common where they live
16.2% aren’t sure if Lyme is contagious
39.6% don’t know if you can get Lyme 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
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 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 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 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
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 experience.