Diagnostic delay for endometriosis in Austria and Germany: causes and possible consequences

Gernot Hudelist; G Hudelist; N Fritzer; A Thomas; Christiane Niehues; C Niehues; P Oppelt; Peter Oppelt; D Haas; Dietmar Haas; Ayman Tammaa; A Tammaa; H Salzer; H. Sälzer

doi:10.1093/humrep/des316

Diagnostic delay for endometriosis in Austria and Germany: causes and possible consequences

Gernot Hudelist, G Hudelist, N Fritzer, A Thomas, Christiane Niehues, C Niehues, P Oppelt, Peter Oppelt, D Haas, Dietmar Haas, Ayman Tammaa, A Tammaa, H Salzer, H. Sälzer

Human Reproduction · 2012 · vol. 27(12) , pp. 3412–3416 · doi:10.1093/humrep/des316 · PMID:22990516 · W2158233530

article OA: closed CC0 ⤵ 362 in-corpus citations

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This study found that the median diagnostic delay for endometriosis in Austria and Germany is 10.4 years, largely due to misdiagnosis and the normalization of symptoms by patients.

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Abstract

STUDY QUESTION: What is the length of the diagnostic delay for endometriosis in Austria and Germany, and what are the reasons for the delay? SUMMARY ANSWER: The diagnostic delay for endometriosis in Austria and Germany is surprisingly long, due to both medical and psychosocial reasons. WHAT IS KNOWN ALREADY: Diagnostic delay of endometriosis is a problematic phenomenon which has been evaluated in several European countries and in the USA, but has not been reported for Germany and Austria. STUDY DESIGN, SIZE, DURATION: A cross-sectional, questionnaire-based multicentre study was conducted in tertiary referral centers in Austria and Germany. From September 2010 to February 2012, 171 patients with histologically confirmed endometriosis were included. PARTICIPANTS, SETTING, METHODS: Patients with a previous history of surgically proven endometriosis, internal diseases such as rheumatic disorders, pain symptoms of other origin, gynecological malignancy or post-menopausal status were excluded from the analysis. Patients with histologically confirmed endometriosis completed a questionnaire about their psychosocial and clinical characteristics and experiences. Of 173 patients, two did not provide informed consent and were excluded from the study. MAIN RESULTS AND THE ROLE OF CHANCE: The median interval from the first onset of symptoms to diagnosis was 10.4 (SD: 7.9) years, and 74% of patients received at least one false diagnosis. Factors such as misdiagnosis, mothers considering menstruation as a negative event and normalization of dysmenorrhea by patients significantly prolonged the diagnostic delay. No association was found between either superficial and deep infiltrating endometriosis or oral contraceptive use and the prolongation of diagnosis. LIMITATIONS AND REASONS FOR CAUTION: There was a possible selection bias due to inclusion of surgically treated patients only. WIDER IMPLICATIONS OF THE FINDINGS: Several factors causing prolongation of diagnosis of endometriosis have been reported to date. The principal factors observed in the present study are false diagnosis and normalization of symptoms. Teaching programs for doctors and public awareness campaigns might reduce diagnostic delay in Central Europe. STUDY FUNDING/COMPETING INTEREST(S): No competing interests exist.

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Condition tags

dysmenorrheaendometriosisdie_deep_infiltrating

MeSH descriptors

Delayed Diagnosis Endometriosis Adult Attitude to Health Austria Austria Cross-Sectional Studies Diagnostic Errors Dysmenorrhea Dysmenorrhea Endometriosis Endometriosis Endometriosis Female Germany Germany Humans Menarche Menarche Menstruation

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References (13)

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[1] A systematic review of the accuracy of ultrasound in the diagnosis of endometriosis via openalex

[2] Can symptomatology help in the diagnosis of endometriosis? Findings from a national case–control study—Part 1 via openalex

[3] Comparison of revised American Fertility Society and ENZIAN staging: a critical evaluation of classifications of endometriosis on the basis of our patient population via openalex

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[9] ENZIAN-Score, eine Klassifikation der tief infiltrierenden Endometriose via openalex

[10] Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries via openalex

[11] Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women via openalex

[12] What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis via openalex

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