Invalidation by medical professionals in post-treatment Lyme disease

Abstract

Patients with post-treatment Lyme disease (PTLD) report negative perceptions of care and significant invalidation from medical professionals. However, the relationship of invalidation to illness severity has not been examined, nor have risk factors for invalidation been identified. This cross-sectional study enrolled 80 patients who met stringent criteria for PTLD. We examined correlations between the Illness Invalidation Inventory and measures of symptom severity, quality of life, and trust in physicians. To study the relationship between invalidation and potential demographic and clinical factors, we generated simple unadjusted and multivariate adjusted linear regression models. We found that higher ‘lack of understanding’ and ‘discounting’ subscale scores of the Illness Invalidation Inventory were significantly positively correlated with higher symptom severity, lower quality of life, and lower trust in physicians. In adjusted linear regression models, older age (lack of understanding: β = − 0.17, p = 0.008, discounting: β = − 0.19, p = 0.001, every 10 years) and male gender (lack of understanding: β = − 0.49, p = 0.016, discounting: β = − 0.51, p = 0.006) were associated with less invalidation. We also identified receiving an alternative diagnosis for PTLD as a mediator in the relationship between gender and invalidation. Based on our findings, we hypothesize that reducing invalidation within the clinical encounter could positively affect illness burden and quality of life for patients with PTLD.