@article{13838,
  author = {Allyson C Bontempo and Lisa Mikesell},
  title = {Patient perceptions of misdiagnosis of endometriosis: results from an online national survey},
  abstract = {<jats:title>Abstract</jats:title><jats:sec id="j_dx-2019-0020_s_999_w2aab3b8b4b1b7b1aab1c16b1Aa"><jats:title>Background</jats:title><jats:p>Endometriosis is an estrogen-dependent disease affecting 10% of females in which endometrial-like tissue grows outside the uterus, resulting in pain, infertility, and physical and psychosocial dysfunction. Prior research documenting diagnostic error reports a 6.7-year mean diagnostic delay. This study takes a patient-oriented approach and aims to complement prior research on diagnostic error by examining patient-reported experiences with misdiagnosis.</jats:p></jats:sec><jats:sec id="j_dx-2019-0020_s_998_w2aab3b8b4b1b7b1aab1c16b2Aa"><jats:title>Methods</jats:title><jats:p>Data were part of a larger online survey comprising nonrandomly sampled patients with self-reported surgically confirmed endometriosis (n = 758). We examined patients’ reports of misdiagnosis, to which healthcare professionals (HCPs) they attributed misdiagnosis, mean diagnostic delay, and endometriosis symptoms and physical sites predicting misdiagnosis reports.</jats:p></jats:sec><jats:sec id="j_dx-2019-0020_s_997_w2aab3b8b4b1b7b1aab1c16b3Aa"><jats:title>Results</jats:title><jats:p>Mean reported diagnostic delay was 8.6 years. 75.2% of patients reported being misdiagnosed with another physical health (95.1%) and/or mental health problem (49.5%) and most frequently by gynecologists (53.2%) followed by general practitioners (34.4%). Higher odds of reporting a physical or mental health misdiagnosis was associated with reports of virtually all symptoms and endometriosis on the bladder, small bowel, pelvic sidewall, and rectum. Higher odds of reporting a physical health misdiagnosis was exclusively associated with reports of endometriosis on the appendix. Higher odds of reporting a mental health misdiagnosis was exclusively associated with reports of a younger symptom onset age; endometriosis on the diaphragm, large bowel, lung, and ureter; and comorbid adenomyosis diagnosis.</jats:p></jats:sec><jats:sec id="j_dx-2019-0020_s_996_w2aab3b8b4b1b7b1aab1c16b4Aa"><jats:title>Conclusions</jats:title><jats:p>Endometriosis continues to present serious and complex diagnostic challenges. These findings corroborate previous objective investigations documenting endometriosis diagnostic error, establish the first patient-reported incidence, and further demonstrate value in including patients in diagnostic error research.</jats:p></jats:sec>},
  year = {2020},
  journal = {Diagnosis (Berl)},
  volume = {7},
  chapter = {97-106},
  pages = {97-106},
  month = {02/2020},
  issn = {2194-802X},
  doi = {10.1515/dx-2019-0020},
}