Alison W. Rebman, MPH, and John N. Aucott, MD
Lyme Disease Research Center, Division of Rheumatology, Johns Hopkins University School of Medicine

Lyme disease is an infection that can be acquired from the bite of specific types of ticks, which are found primarily throughout the Northern Hemisphere. Cases of Lyme disease have increased substantially in the past decades, and the disease affects hundreds of thousands of people in the United States alone each year. It has long been suspected that some people who are diagnosed with Lyme disease never fully recover their health after treatment and are left with persistent fatigue, memory problems, aches and pains, and other symptoms.

After repeatedly hearing strikingly similar stories from patients, over a decade ago, we decided to formally investigate these symptoms and their relationship to patients’ quality of life. At the time, we were fortunate to have access to many patients with Lyme disease who were willing to serve as research participants and complete detailed questionnaires over a 6-month period after their diagnosis and treatment. These data led to our 2012 publication, one of the first prospective studies to examine the frequency, severity, and impact on life functioning of these persistent symptoms. The full article is available here in the journal Quality of Life Research.

We found that while many patients did recover, a significant group reported new-onset symptoms that increased or plateaued over time up to 6 months after treatment of their infection. We also found that these patients had lower SF-36 health related quality of life scores, indicating that for many, these symptoms are not necessarily minor.

We are pleased that our initial work remains relevant and of significant interest on Altmetric over a decade later. We feel that this speaks both to the increasing number of patients affected by Lyme disease, as well as to a growing recognition of the presence and often significant impact of these lingering symptoms on patients’ health. Since our initial publication, we have had the opportunity to open the Johns Hopkins University Lyme Disease Research Center, which has expanded the range of our research studies and led to the publication of many articles, with the goal of characterizing and understanding the patient impact of these persistent symptoms.

There are many pressing questions in this field that remain unanswered. In recent years, the appearance of COVID-19 and an appreciation of ‘long COVID’ has shed light on infection-associated chronic illnesses in general. Research focusing on how different infections can trigger a similar constellation of symptoms is much-needed, as we still do not understand what causes these persistent illnesses. Until a mechanism or test-of-cure can be identified, these symptoms remain difficult to see and often to appreciate for physicians and those unaffected. More importantly, the development of new treatments to restore health for these patients is lacking. Quality of life measures have an important role to play in both the clinical and research environment in these types of illness settings. They can help quantify the magnitude and impact of these often-debilitating symptoms, as well as reflect what may be of particular relevance to patients themselves; their ability to participate and engage in their lives in ways that are meaningful to them.

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

How to Submit a Newsletter Editorial
Do you have something to share about health related quality of life and patient-centered outcomes? We want to hear from you!
Learn More

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.