Patient Experiences

Patient Experience Research

Surveys and interviews have been conducted with nearly 1000 patients with a tick-borne disease since 2021.  Detailed results are being prepared for publication so not all results are available. However, because of Ticks in Virginia's commitment to research translation and promotion of best practices, key results and the most important lessons learned from patients in these studies are highlighted. All studies were approved by the University of Lynchburg's Institutional Review Board. 

Recommendations for Healthcare Providers

In 2021, over 400 patients 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 studies with over 400 participants, 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 410 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 in 2021.  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 based also decreased as the perceived symptom severity rating increased.  A patient symptom rating and health-related quality of life impact continuum was developed with results and have the potential to help providers and patients better recognize and understand the complexity and variability of Alpha-gal Syndrome and its effects on quality of life.  The continuum is currently under review and not yet available for distribution. However, 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.

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.