Lived Experience Studies

Tick-borne Disease Lived Experience Studies

Studies with open-ended questions and interviews have been conducted with over 1000 adults and parents of children with diagnosed tick-borne diseases to learn about their lived experiences. Dr. Hall, Founder of Ticks in Virginia, also regularly engages in conversations during outreach activities and has talked with hundreds of people with tick-borne diseases in Virginia. Results are shared in presentations and used to create resources and develop new studies to advance public health education and clinical practice.

Recommendations for Healthcare Providers

Over 400 adults and parents of children with a tick-borne disease participated in surveys about their experiences with healthcare providers related to the diagnosis, management, and treatment of their tick-borne disease. Nearly 50 of these participants participated in 30-minute follow-up interviews. Fifteen recommendations were developed through a thematic analysis of participants' responses. Recommendations are described on the Resources for Healthcare Providers page.

Impacts on Ability to Work

Employees with a tick-borne disease experience symptoms that impact their ability to go to work (absenteeism), be fully present while at work (presenteeism), and/or be able to perform their job responsibilities at their highest potential (productivity). From a study with over 400 adults, the most common symptoms for all TBDs combined were fatigue & tiredness, upset stomach & nausea, joint pain & swelling, disturbed sleep, and headaches.

In some cases, employees were fired, forced to reduce hours or quit, or had to change professions because of the severity of their symptoms (all TBDs) or because of allergic reactions resulting from workplace exposures (Alpha-gal Syndrome).

Employers, particularly those with employees working in high-risk occupations and workplaces located in tick-endemic regions, need to recognize the risk of tick bites for their employees (both on and off the job) and consider implementing programs, practices, and policies to support employees who have a tick-borne disease. Learn more on the Resources for Employers page.

Impact of Alpha-gal Syndrome on Health-Related Quality of Life

A total of 411 adults with Alpha-gal Syndrome from 24 states and 5 countries and 18 parents of children with AGS from 8 US states and Australia participated in a mixed-method survey. Participants were asked to rate the severity of their symptoms and then describe their rating. Results showed that as the perceived symptom severity rating increased, emotional, social, and physical functioning decreased. Experienced quality of life also decreased as the perceived symptom severity rating increased. A patient symptom rating and health-related quality of life impact continuum was developed as a tool for providers and patients to use to for developing personalized management plans. It is recommended that healthcare providers routinely assess the perceived severity of allergy symptoms and quality of life of all patients diagnosed with Alpha-gal Syndrome and provide them with evidence-based resources to help them adjust to this life-changing diagnosis.

Dr. Hall is currently working on a book on the lived experiences of Alpha-gal as it impacts 8 dimensions of well-being. She will be integrating results from this study, findings from interviews and surveys from other TBD Experience Studies, and conversations with hundreds of people living with AGS for the book, which is set to launch in Fall 2025.

Experiences by Type of Tick-borne Disease

Coming Soon! Not all tick-borne diseases are the same!

Patient experiences by type of disease, including the lesser known Powassan and Tularemia, will be highlighted here. Data is currently being organized and analyzed by type of tick-borne diseases. Participant quotes from both interviews and open-ended survey responses will be shared.

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