Abstract
Background: 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 the incidence of 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.
Methods: Data were part of a larger online survey (April-August 2017) comprising nonrandomly sampled patients with self-reported surgically-confirmed endometriosis. We examined patients’ perceptions of misdiagnosis, to which healthcare professional (HCP) types they attributed misdiagnosis, mean diagnostic delay, and reported symptoms predictive of misdiagnosis (N = 763).
Results: Mean reported diagnostic delay was 8.6 years. 75.5% of patients reported being misdiagnosed with a mental and/or other physical health problem. Patients reported being misdiagnosed most frequently by gynecologists, followed by general practitioners, other HCP types, and endometriosis specialists. Higher odds of reporting misdiagnosis were associated with reports of lower endometriosis stage, various endometriosis locations, various genitourinary symptoms and pain locations, headache, and fatigue.
Conclusions: From the patient perspective, endometriosis continues to present serious and complex diagnostic challenges. These findings corroborate previous objective investigations documenting endometriosis diagnostic error and further demonstrate value in including patients in diagnosis research. Given patient perceived experiences with diagnostic error, these findings suggest a potential important target of intervention to, if not improve actual diagnostic error of endometriosis, improve communication between patients and HCPs in situations in which patients perceive misdiagnosis to occur.