Strengths and weaknesses in the diagnostic process of endometriosis from the patients’ perspective: a focus group study

Moniek van der Zanden, Laura de Kok, W. L. D. M. Nelen, Willianne L D M Nelen, D.D.M. Braat, Didi D M Braat, Annemiek W Nap, Annemiek Nap
Diagnosis (Berlin, Germany) · 2021 · vol. 8(3) , pp. 333–339 · doi:10.1515/dx-2021-0043 · PMID:34318653 · W3183245806
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⚙ AI-generated summary by claude@2026-06, 2026-06-08 ⓘ

This focus group study identified that patients' delayed endometriosis diagnosis was hindered by lack of medical staff belief and poor collaboration, but facilitated by patient persistence and practitioner knowledge.

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Abstract

OBJECTIVES: Endometriosis is characterized by a long interval between onset of symptoms and diagnosis. Detailed information about the patients' perspective on the diagnostic delay of endometriosis is scarce. The aim of this study was to identify strengths and weaknesses in the diagnostic process of endometriosis from the patients' perspective. METHODS: Qualitative study with semi-structured focus groups. Participants were women between 18 and 45 years old with a recently confirmed diagnosis. The focus groups were audio recorded and fully transcribed. Grounded theory methodology was applied for data analysis. RESULTS: Six focus groups were organized, in which 23 women participated. Mean time from start of symptoms to diagnosis was 8.5 years. Dominant themes were knowledge about normal menstruation and endometriosis, being believed and acknowledged by medical staff, and collaboration between health care providers including fast referral to a gynaecologist. Barriers to a timely referral and diagnosis were young age, normalization of symptoms and a lack of awareness in general practitioners. Facilitating factors included adequate knowledge and skills of the general practitioner, a desire for pregnancy and persisting in a request for specialist consultation by the patient. CONCLUSIONS: The diagnostic process of endometriosis is hampered by delayed consultation, inadequate appraisal of symptoms by general practitioners and the interaction between patients and medical professionals. Efforts should be made to increase public awareness and to provide medical staff with sufficient knowledge and skills to adequately acknowledge presented symptoms.

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Condition tags

endometriosis

MeSH descriptors

Endometriosis Endometriosis General Practitioners Adolescent Adult Delayed Diagnosis Female Focus Groups Humans Middle Aged Pregnancy Referral and Consultation Young Adult

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (39)

Cited by (25)

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