The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome

<b>Background</b>: Misdiagnosis, defined as the incorrect identification of a condition or the failure to identify a condition altogether, can lead to delayed treatment, unnecessary interventions, and avoidable morbidity and mortality. Ehlers-Danlos Syndrome (EDS) is a complex pain disorder that is often misdiagnosed or underdiagnosed due to lack of awareness among healthcare providers and variability in diagnostic criteria. <b>Objectives</b>: This study aimed to determine the misdiagnosis rate of hypermobile EDS (hEDS) with psychiatric disorders by physicians who are not board-certified in psychiatry. <b>Methods</b>: Between January 2010 and December 2018, the medical records of 429 patients who were diagnosed with hEDS were reviewed and analyzed. During the process of taking a history, patients were asked if they had previously been told by physicians who were not board-certified in psychiatry that their symptoms were "in their head", that they were "making it up" or seeking attention, or that they might suffer from Munchausen syndrome by proxy or a factitious disorder, or if such physicians had diagnosed them with conversion disorder. The Brown University Human Research Protection Program determined that the proposed activity was not research involving human subjects. <b>Results</b>: A retrospective chart review was conducted. Among the 429 patients, 405 patients (94.4%) said yes to at least one of the questions, with only 24 patients (5.6%) not having been misdiagnosed with psychiatric illnesses. A total of 378 patients (88%) were told that they were "making it up", 326 patients (76%) were told that they were attention-seeking, 286 patients (67%) were diagnosed with conversion disorder, 255 patients (60%) were told that "it was in their head", and 16 patients (4%) were diagnosed with Munchausen syndrome by proxy or a factitious disorder. <b>Conclusions</b>: Misdiagnosis of Ehlers-Danlos Syndrome is a pervasive issue with profound implications for patients' physical, mental, and economic well-being. By addressing the underlying causes of misdiagnosis and implementing strategies for improved recognition, the healthcare system can significantly enhance outcomes for individuals who are affected by these complex disorders.