QS ENDO Real – A Study by the German Endometriosis Research Foundation (SEF) on the Reality of Care for Patients with Endometriosis in Germany, Austria and Switzerland

Abstract

Endometriosis affects a significant number of young premenopausal women. Quite apart from the medical challenges, endometriosis is a relevant burden for healthcare and social security systems. Standardized quality indicators for the treatment of endometriosis have not previously been systematically verified. The three-stage study QS ENDO was initiated to record and improve the reality and quality of care. One of its aims is to create quality indicators for the diagnosis and treatment of endometriosis. For the first stage of QS ENDO Real, letters were sent to all 1014 gynecological departments in the German-speaking area of Europe (the DACH region) which included a questionnaire as a means of surveying the current state of care. A total of 296 (29.2%) of the centers which received the questionnaire participated in the survey. The subsequent evaluation of the completed questionnaires showed that the majority of patients with endometriosis (around 60%, based on estimates from the data) are not treated in hospitals which have been certified by the SEF. The guidelines recommend the use of specific classification systems (rASRM, ENZIAN) but, depending on the level of care offered by the hospital, only around 44.4 to 66.4% of departments used the rASRM score and only 27% of hospitals used the ENZIAN classification system to describe deep-infiltrating endometriosis. When taking patientsʼ medical history, some centers (6.6 – 17.9%) considered questions about leading symptoms such as dyschezia, dysuria and dyspareunia to be unimportant. QS ENDO Real has made it possible, for the first time, to get an overview of the reality of care provided to patients with endometriosis in the German-speaking areas of Europe. The findings indicate that several of the measures recommended in international guidelines as the gold standard of care are only used to treat some of the patients. In this respect, more efforts will be needed to provide more advanced training. The approach used for treatment must be guideline-based, also in not-certified centers, to improve the quality of care in the treatment of patients with endometriosis.

Key words

endometriosis - quality assurance - quality of care - care research

^** Members of the QS Endo Working Group who attended the Weissensee conferences of the SEF in 2016 and 2017: Dubravko Barisic, Alexander Boosz, Iris Brandes, Gerald Fischerlehner, Nannette Grübling, Elisabeth Janschek, Bernhard Krämer, Ivo Meinhold-Heerlein, Frank Oehmke, Peter Oppelt, Ralf Rothmund, Darius Salehin, Chi Mi Scheible, Miriam Schempershofe, Vanadin Seifert-Klauss, Omar Shebl, Sigrid Vingerhagen Pethick, Peter Widschwendter, Pauline Wimberger, Monika Wölfler, Felix Zeppernick, Magdalena Zeppernick.

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