Lorraine Johnson JD|MBA*, Mira Shapiro MSc** *Principal Investigator, MyLymeData; **Biostatistician, Analytic Designers LLC Delayed Diagnosis Linked to Persistent Lyme Disease NAM Diagnostic Errors Schematic and Lyme Diagnostic Errors in Early Lyme Disease Most Patient Symptoms are Not Counted by CDC CDC Does Not Count Most Symptoms Acknowledgements We thank Dr. Elizabeth Maloney for her insightful comments, Allison Childs for graphic design, and the patients participating in MyLymeData, without whom this research could not have been done. Suggested Citation: Johnson, L.; Shapiro, M. (2019): Delayed Diagnosis Linked to Persistent Lyme Disease. figshare. Poster. https://doi.org/10.6084/m9.figshare.9947105 Contact lbjohnson@lymedisease.org | mira.shapiro@analyticdesigners.com Conclusion Most patients with persistent Lyme disease are not diagnosed until six or more months after symptom onset. Early diagnosis and treatment of acute Lyme disease usually prevents the progression to persistent Lyme disease. Diagnostic barriers include: using inaccurate geographic risk maps, failing to consider the most common early manifestations of the disease, and over reliance on imperfect lab tests. Remedying these identified diagnostic errors may significantly improve patient outcomes by providing patients with early diagnosis and treatment, which is associated with higher treatment success. References Newman-Toker, D. et al. Diagnosis 2019 Jul 11. doi:10.1515/dx-2019-0019 Khanna, G. AHRQ Blog. 2019 May 6. https://www.ahrq.gov/news/blog/ahrqviews/ahrqs-road-ahead.html NAM. 2015. Improving Diagnosis in Medicine. doi:10.17226/21794. Lee-Lewandrowski, E. et al. American Journal of Clinical Pathology. 2019 Jul. doi:10.1093/ajcp/aqz030 CDC, Lyme Case Report. 2009. https://www.cdc.gov/lyme/resources/LymeDiseaseCaseReportForm.pdf Introduction Lyme disease is the most common vector-borne disease in the United States. Diagnostic errors are believed to be common. Errors stemming from delayed or inaccurate diagnosis are generally the number one cause of serious harms among medical errors. (Newman-Toker 2019) The Agency for Healthcare Research and Quality has made reduction of diagnostic errors one of its three strategic priorities. (Khanna 2019) The National Academy of Medicine (NAM) has developed a schematic to identify points in the medical care system where diagnostic errors occur. (NAM 2015) It deﬁnes diagnostic medical error as “the failure to (a) establish an accurate and timely explanation of the patient's health problem(s) or (b) communicate that explanation to the patient." NAM looks at errors that occur when the patient ﬁrst encounters the healthcare system, when clinical history is taken, during physical exam, and when diagnostic testing is being conducted. They then look at the consequences and costs of the diagnostic errors. This study analyzes patient responses from the MyLymeData Patient Registry using the NAM schematic to identify points of diagnostic errors in persistent Lyme disease. Sample Determination Methods and Results Lyme Lab Test Positivity Rates in 2016 The MyLymeData patient registry, developed by LymeDisease.org, enables patient healthcare data to be pooled. Since its launch in November 2015, over 12,000 patients have enrolled. This study included 3,903 US residents clinically diagnosed with Lyme disease who completed the Phase I Survey, which ran from November 2015-2016. Most participants (79%) have late or persistent Lyme disease. Questions included time to diagnosis, early symptoms, inaccurate lab tests, and whether their diagnosis relied on perception of Lyme in their state. The NAM schematic applied to acute Lyme disease diagnosis illustrates sources of errors including: inaccurate geographic exclusions, failure to consider full symptom range, and over reliance on inaccurate diagnostic tests. Diagnostic delays occur when clinicians restrict their diagnosis using the five CDC surveillance criteria: rash, neuropathy, Bell’s