Invalidation by medical professionals in post-treatment Lyme disease

• Published in: Scientific reports Vol. 14; no. 1; pp. 19406 - 10
• Main Authors: Rebman, Alison W., Yang, Ting, Aucott, John N.
• Format: Journal Article
• Language: English
• Published: London Nature Publishing Group UK 21.08.2024; Nature Publishing Group; Nature Portfolio
• Subjects: 692/1807/410/2610; 692/499; 692/700/784; Adult; Aged; Cross-Sectional Studies; Female; Gender; Humanities and Social Sciences; Humans; Illnesses; Invalidation; Lyme disease; Lyme Disease - psychology; Male; Medical personnel; Medical treatment; Middle Aged; multidisciplinary; Patients; Physicians - psychology; Post-treatment Lyme disease; Posttransplant lymphoproliferative disorders; Quality of Life; Regression analysis; Risk factors; Science; Science (multidisciplinary); Severity of Illness Index; Vector-borne diseases; Lyme disease; Invalidation; Gender; Quality-of-life; Post-treatment Lyme disease
• ISSN: 2045-2322; 2045-2322
• DOI: 10.1038/s41598-024-70556-7

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.