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 disor...
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MDPI AG
2025-05-01
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| author | Chanbin Lee Pradeep Chopra |
| author_facet | Chanbin Lee Pradeep Chopra |
| author_sort | Chanbin Lee |
| collection | DOAJ |
| description | <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. |
| format | Article |
| id | doaj-art-23a5707e09694d65b47643285e2bfa4d |
| institution | Kabale University |
| issn | 2227-9067 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | MDPI AG |
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| series | Children |
| spelling | doaj-art-23a5707e09694d65b47643285e2bfa4d2025-08-20T03:26:16ZengMDPI AGChildren2227-90672025-05-0112669810.3390/children12060698The Incidence of Misdiagnosis in Patients with Ehlers–Danlos SyndromeChanbin Lee0Pradeep Chopra1Warren Alpert Medical School, Brown University, Providence, RI 02903, USAWarren Alpert Medical School, Brown University, Providence, RI 02903, USA<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.https://www.mdpi.com/2227-9067/12/6/698Ehlers–Danlos Syndromechronic painmisdiagnosis |
| spellingShingle | Chanbin Lee Pradeep Chopra The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome Children Ehlers–Danlos Syndrome chronic pain misdiagnosis |
| title | The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome |
| title_full | The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome |
| title_fullStr | The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome |
| title_full_unstemmed | The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome |
| title_short | The Incidence of Misdiagnosis in Patients with Ehlers–Danlos Syndrome |
| title_sort | incidence of misdiagnosis in patients with ehlers danlos syndrome |
| topic | Ehlers–Danlos Syndrome chronic pain misdiagnosis |
| url | https://www.mdpi.com/2227-9067/12/6/698 |
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