Summary
A Johns Hopkins study finds that patients with post treatment Lyme disease, particularly women and younger patients, are prone to illness invalidation from medical professionals. Patients who reported the highest levels of invalidation were also found to have higher symptom severity, lower quality of life, and lower trust in physicians. Improved physician education is needed on the potential negative impact of illness invalidation on patient health outcomes.
Why was this study done?
Patients with Lyme infection-associated chronic illness can experience debilitating symptoms that disrupt daily function and quality of life. Yet, when seeking treatment, they commonly encounter illness invalidation from medical professionals. This is an understudied and underappreciated aspect of the patient illness experience. The study aims to quantify the frequency of and risk factors for illness invalidation by medical professionals in the context of post-treatment Lyme disease (PTLD), and to examine if illness invalidation by healthcare practitioners impacts illness severity and quality of life. Additionally, in light of the historic penchant to minimize women’s symptoms, especially invisible symptoms such as pain, the study specifically considered gender in studying these relationships.
How was this study done?
The study enrolled 80 patients with rigorously characterized post-treatment Lyme disease (PTLD). PTLD patients were given quantitative assessments including the Illness Invalidation Inventory (a validated measurement tool used with fibromyalgia and other rheumatic diseases) and other questionnaires including the Short-Form Health Survey (SF-36) and the Post-Lyme Questionnaire of Symptoms (PLQS). Correlations between these measured were examined, and the relationship between Illness Invalidation Inventory scores and potential demographic and clinical factors (such as age, gender, education, illness duration, and Lyme disease onset presentation) were examined using multiple linear regression models.
What were the major findings?
Approximately 49% of patients in the study had experienced lack of understanding from medical professionals, and 29% experienced discounting. The ‘lack of understanding’ and ‘discounting’ scores measured by the Illness Invalidation Inventory were significantly positively correlated with higher symptom severity, lower quality of life, and lower trust in physicians.
After controlling for other factors, older age and male gender were associated with less illness invalidation from medical professionals. Interestingly, these factors were stronger contributors to illness invalidation than other clinical factors, such as how long patients had been sick, and their initial Lyme disease presentation. Approximately half of PTLD patients in the study (51%) had been told their initial Lyme disease symptoms represented another illness or condition. The study also found women were more likely to receive an alternative diagnosis for their persistent symptoms, which in turn was associated with more discounting and lack of understanding.
The following table highlights examples of invalidation that PTLD participants in the study encountered:
| Women Endorsed The Following Statements At Significantly Higher Rates Than Men: | % of Women | % of Men | % of Total Participants |
| Felt rejected by physician or other health care provider | 69.4% | 40.9% | 53.75% |
| Severity of illness doubted by health care provider | 72.2% | 50.0% | 60.0% |
| Provider doubted illness was real | 61.1% | 43.2% | 51.25% |
| Told by provider that illness due only or in large part to psychological causes, such as anxiety or depression | 47.2% | 20.5% | 32.5% |
What is the impact of this work?
Uncertain underlying disease mechanisms and treatments have contributed to decades of medical debates regarding PTLD, creating a challenging contested illness experience for many patients. Despite research demonstrating PTLD is an impairing infection-associated chronic illness, invalidation by medical professionals is a common yet understudied problem that this study helps quantify.
Results of this study imply that patients with PTLD, particularly women and younger patients, may be especially vulnerable to this type of illness invalidation. The pervasiveness of invalidation and its association with symptoms (in particular, mental health symptoms) in patients with well-characterized PTLD suggest that invalidation within the patient-provider relationship has the potential to aggravate and confound patients’ illness burden.
The researchers hypothesize that reducing illness invalidation within patient-practitioner encounters could positively affect illness burden and quality of life for patients with PTLD.
This research was supported by:
This work was supported by the Steven & Alexandra Cohen Foundation, which had no role in any of the
following: design and conduct of the study, data collection, analysis or interpretation, preparation, review or approval of the manuscript for publication.
Study team members:
Alison W. Rebman1*, Ting Yang1, John N. Aucott1
1Lyme Disease Research Center, Division of Rheumatology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
*Corresponding Author:
2360 W. Joppa Rd, Suite 320
Lutherville, MD 21093, USA
Ph: 410-616-7596 Email: arebman1@jhmi.edu
