Pattern of Endometriosis Care in German-speaking Countries: the QS ENDO Project

Offizielles Organ: AGRBM, BRZ, DVR, DGA, DGGEF , DGRM, D·I·R, EFA, OEGRM, SRBM/DGE Krause & Pachernegg GmbH, Verlag für Medizin und Wirtschaft, A-3003 Gablitz Journal für Reproduktionsmedizin und Endokrinologie – Journal of Reproductive Medicine and Endocrinology – Andrologie • Embryologie & Biologie • Endokrinologie • Ethik & Recht • Genetik Gynäkologie • Kontrazeption • Psychosomatik • Reproduktionsmedizin • Urologie Indexed in EMBASE/Excerpta Medica/Scopus www.kup.at/repromedizin Online-Datenbank mit Autoren- und Stichwortsuche Pattern of Endometriosis Care in German-speaking Countries: the QS ENDO Project Zalewski M, Zeppernick F, Wölfler MM, Janschek E Keckstein J, Sillem M, Schweppe KW Meinhold-Heerlein I J. Reproduktionsmed. Endokrinol 2017; 14 (6), 311-312 20.-21. März 2026 Universitätsmedizin Mainz ENDOKRINOLOGIE & FERTILITÄT FÜR KLINIK & PRAXIS Weitere Informationen & Anmeldung unter Einladung zu unserer wissenschaftlichen Veranstaltung Endo-Ferti-Forum Brücke(n) zwischen Unikliniken und Praxen an Rhein und Main(z) – die aus dem bisherigen Format „Ferti Forum“ ab 2026 hervorgeht – Freuen Sie sich auf spannende Vorträge und den lebendigen Austausch mit Kolleg:innen und Expert:innen aus Klinik und Praxis. Freitagabend laden wir Sie herzlich zu einem entspannten Empfang ein – eine perfekte Gelegenheit, Kontakte zu knüpfen und den T ag genussvoll ausklingen zu lassen. Wissenschaftliche Leitung: Univ.-Professorin Annette Hasenburg, Dr. Susanne Theis, Universitätsmedizin Mainz, Sanitätsrat Dr. Werner Harlfinger, BVF Rheinland-Pfalz Dr. Rüdiger Gaase, BVF Hessen Dr. Klaus J. Doubek Schirmherrschaften: Prof. Nicole Sänger, Uniklinik Bonn, Prof. Jan-Steffen Krüssel, Uniklinik Düsseldorf, Dr. Annette Bachmann, Uniklinik Frankfurt am Main, Prof. Christine Skala, Uniklinik Köln 311 Pattern of Endometriosis Care in German-speaking Countries: the QS ENDO Project M. Zalewski1*, F. Zeppernick1*, M. M. Wölfler1,2, E. Janschek3, J. Keckstein3, M. Sillem4, K.-W. Schweppe5, I. Meinhold-Heerlein1; for the QS Endo committee members of the Stiftung Endometrioseforschung (SEF) „ Introduction Endometriosis is a common disorder af- fecting approximately 10–15% of repro- ductive-age women [1]. It is character - ized by the presence of endometrial-like tissue outside the uterine cavity. Typical symptoms include dysmenorrhea, pelvic pain and subfertility. The symptoms and treatment-related ef- fects of endometriosis often affect young, active women during their economical- ly productive lives, which – the medical challenges aside – causes a substantial fi- nancial burden on the health-care system [2, 3]. One of the main reasons for the high impact on patients’ quality of life (QoL) is the long delay in diagnosis. Pa- tients often experience a lag time of up to 10 years between the onset of symptoms and diagnosis [4, 5]. The effects of deal- ing with debilitating pain combined with the emotional impact of sub-fertility fur- ther complicate the patient’s situation. It seems obvious that more research is needed to determine physician and pa- tient factors that influence diagnostic and treatment decisions in endometriosis. The positive changes obtained by bench- marking in the treatment of ovarian can- cer was one of the major drivers motivat- ing the bid to repeat that success story in this, one of the main medical challeng- es facing young women during their pro- ductive lives [6]. Work on ovarian can- cer demonstrated that the creation of a quality assurance program (QS OV AR) resulted in overall improvement in the quality of care of patients with ovarian cancer. While adherence to treatment guidelines varied markedly early in the study [7], rates of staging and treatment according to guidelines improved over time with continued participation in the program. The QS OV AR program also demonstrated that the structure and size of the hospital did not have a signifi- cant impact on survival. The only trans- parent treatment facility characteristic that significantly impacted the progno- sis of ovarian cancer was participation in clinical studies [6]. One study on ovari- an cancer found that the likelihood of a patient receiving a recommended thera- py grew when providers received train- ing [8]. „ QS ENDO Project Standardized quality indicators for treat- ment of endometriosis have yet to be es- tablished. This lack of standards repre- sents a hurdle to improving the quality of treatment, and it is one which ought to be overcome. In view of the success of the QS OV AR program, we hope that the im- plementation of a quality assurance pro- gram in endometriosis (QS ENDO) will help to raise the standard of endometriosis care in German-speaking countries and gain better adherence to treatment guide- lines. Furthermore, we hope that the pro- gram will have positive effects in terms of shortening the lag time between the on- set of symptoms and diagnosis, reducing non-beneficial surgical interventions and improving patient satisfaction or QoL. The QS ENDO program is to proceed in four phases: QS ENDO Real, QS ENDO Pilot, QS ENDO Study and QS ENDO Received: August 31, 2017; accepted after revision: October 5, 2017 (responsible Editor: Dr. K. Bühler, Stuttgart) *contributed equally From the 1Department of Gynecology and Obstetrics, University Hospital RWTH Aachen, Germany; the 2Department of Gynecology and Obstetrics, University Hospital Graz, Austria; the 3Department of Obstetrics and Gynecology, Villach General Hospital, Villach, Austria; the 4Clinic at the Rosengarten, Mannheim; and the 5Department of Obstetrics and Gynecology, Ammerland Clinic, Westerstede, Germany Correspondence: Prof. Dr. Ivo Meinhold-Heerlein, Department of Gynecology and Obstetrics, University Hospital RWTH Aachen, Pauwelsstraße 30, D-52070 Aachen; e-mail: [email protected] Das Qualitätssicherungsprogramm QS ENDO wurde initiiert, um die Versorgungsrealität für Endometriose in der DACH-Region (Deutschland, Österreich, Schweiz) zu erfassen. Die erste Phase (QS ENDO Real) wird einen Überblick über die aktuelle Versorgung von Endometriosepatientinnen erbringen. In der zweiten Phase (QS ENDO Pilot) werden die tatsächlichen Behandlungen an Endometriosezentren der Stufe II und III innerhalb eines einmonatigen Zeitraumes abgefragt. In Pha- se III (QS ENDO Study) wird diese Abfrage auf alle behandelnden Kliniken in der DACH-Region ausgeweitet. Das QS ENDO-Projekt wird als erstes Programm dieser Art ein umfassendes Verständnis der tatsächlichen Versorgungsrealität liefern. Dies soll dabei helfen, Qualitätsindikatoren für die Diagnostik und Therapie der Endometriose zu generieren. Schlüsselwörter: Endometrioseversorgung, Qualitätssicherung, Qualitätsindikatoren The implementation of a quality assurance program in endometriosis QS ENDO was initiated to evaluate the actual pattern of endometriosis care in Ger - man-speaking countries. After the first phase (QS ENDO Real) which will yield an overview of the current endometriosis care, phase II (QS ENDO Pilot) will be retrieving the actual care of the patients during a 1-month period in all high-level certified endometriosis centers. In phase III (QS ENDO Study), a representative, comprehensive analysis of care across all treating facilities of the German-speaking countries is planned. The QS ENDO project will be the first program of its kind to acquire a profound understanding of the pattern and quality of endometriosis care, which will help to generate quality indicators for diagnosis and treatment. J Reproduktionsmed Endokrinol_Online 2017; 14 (6): 311–2. Key words: Endometriosis care, quality assurance, quality indicators J Reproduktionsmed Endokrinol_Online 2017; 14 (6) For personal use only. Not to be reproduced without permission of Krause & Pachernegg GmbH. Pattern of Endometriosis Care in German-speaking Countries: the QS ENDO Project 312 Follow up. The four phases shall be im- plemented in stages over course of the coming decade. The aim of Phase I (QS ENDO Real) is to obtain a comprehensive overview of current availability and quality of care of patients with endometriosis in German- speaking countries. During Phase II (QS ENDO Pilot), cent- ers already certified as high-level endo- metriosis specialist centers (Levels II and III) by the Stiftung Endometriose- forschung (SEF) will be asked to pro- vide detailed records of all patients diag- nosed and treated within a 1-month peri- od. Each of the approximately 60 cen ters should report on an average of 10 con- secutive patients. During Phase III (QS ENDO Study), all gynecologic treatment facilities in the German-speaking countries (the so- called DACH region) will be asked to re- port on a sample of patients during a spe- cific treatment period. This will enable a representative, comprehensive analysis of care across the region. The number of patients whose care each facility will be asked to track as part of the study will be matched to the facility’s size and struc- ture based on the results of Phase I. Phase IV (QS ENDO Follow-up) is in- tended to follow up on care and outcomes for patients documented during Phases II and III in order to generate valid data on the efficacy of treatment. The purpose of Phase I (QS ENDO Real) is to evaluate the pattern and quali- ty of endometriosis care in the Europe- an countries in which the predominate every day language is German, or in other words, in the so-called DACH countries of Germany (D), Austria (A) and Swit- zerland (CH). All gynecology departments in the DACH region will be contacted via regu- lar mail and asked to provide a descrip- tion of the current quality of care of en- dometriosis patients. A two-page ques- tionnaire will be supplied to facilitate reporting. The parameters of the ques- tionnaire were developed by a panel of 25 experts during a 3-day workshop on quality management in endometriosis treatment which took place at the Weis- sensee Conference of the scientific board of the Stiftung Endometrioseforschung (SEF) in Austria in 2016. The goal is a response rate of at least 10–20%. In general, the questionnaire includes several structural as well as content-re- lated questions: – Apart from the size and structure of the treatment facility, information about human resource management as well as providers’ level of educa- tion and training are surveyed. – The questionnaire asks a responding physician to estimate the number of patient contacts as well as the num- ber and type of surgical interventions which take place and – another set of questions focuses on the assessment of certain symptoms and diagnostic steps, e.g., the evalua- tion of dysmenorrhea or the use of transvaginal ultrasound for an effec- tive and efficient patient work-up. To our knowledge, the QS ENDO pro- ject will be the first effort spanning the DACH region to acquire a profound un- derstanding of the pattern and quality of endometriosis care, which will help to generate quality indicators for treatment. A strength of the concept of QS ENDO Real is that it provides a pen-to-paper re- sponse setting, creating a low threshold for respondents to be willing to partici- pate; but the very same feature might also be seen as a weaknesses in that re- spondents may overestimate or underes- timate some data. Finally, we would add that the potential bias caused by respondents approximat- ing numbers of patients during Phase I will be corrected during Phases II and III. In those phases (QS ENDO Pilot and Study), information will be gathered about actual diagnostics and treatments performed in consecutive patients based on real patient data rather than on esti- mates. As the questionnaires for Phase I were distributed in 2016, we expect to be able to publish the results of QS ENDO Real by the end of 2017. „ Acknowledgements QS Endo committee members: Du- bravko Barisic, Alexander Boosz, Iris Brandes, Gerald Fischerlehner, Nan- nette Grübling, Bernhard Krämer, Frank Oehmke, Peter Oppelt, Ralf Rothmund, Darius Salehin, Chi Mi Scheible, Mi- riam Schempershofe, Vanadin Seifert- Klauss, Omar Shebl, Sigrid Vinger - hagen-Pethick, Peter Widschwendter, Pauline Wimberger. „ Conflict of Interest The authors have no conflict of interest to disclose. References 1. Burney RO, Giudice LC. Pathogenesis and pathophysiology of endometriosis. Fertil Steril 2012; 98: 511–9. 2. Ulrich U, Buchweitz O, Greb R, Keckstein J, von Leffern I, et al.; German and Austrian Societies for Obstetrics and Gyneco- logy. National German Guideline (S2k): Guideline for the Dia- gnosis and Treatment of Endometriosis: Long Version – AWMF Registry No. 015-045. Geburtshilfe Frauenheilkd 2014; 74: 1104–18. 3. Simoens S, Dunselman G, Dirksen C, Hummelshoj L, Bokor A, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012; 27: 1292–9. 4. Nnoaham KE, Hummelshoj L, Webster P . Impact of endometri- osis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011; 96: 366–73. 5. Hudelist G, Fritzer N, Thomas A, Niehues C, Oppelt P , et al. Diagnostic delay for endometriosis in Austria and Germany: causes and possible consequences. Hum Reprod 2012; 27: 3412–6. 6. du Bois A, Rochon J, Lamparter C, Pfisterer J. Impact of cent- er characteristics on outcome in ovarian cancer in Germany. Zentralbl Gynakol 2005; 127: 18–30. 7. du Bois A, Rochon J, Lamparter C, Pfisterer J. The Quality Assurance Program of the AGO Organkommission OVAR (QS- OVAR): Pattern of Care and Reality in Germany 2001. Zentralbl Gynakol 2005; 127: 9–17. 8. Muñoz KA, Harlan LC, Trimble EL. Patterns of care for women with ovarian cancer in the United States. J Clin Oncol 1997; 15: 3408–15. J Reproduktionsmed Endokrinol_Online 2017; 14 (6) Haftungsausschluss Die in unseren Webseiten publizierten Informationen richten sich ausschließlich an geprüfte und autorisierte medizinische Berufsgruppen und entbinden nicht von der ärztlichen Sorg- faltspflicht sowie von einer ausführlichen Patientenaufklärung über therapeutische Optionen und deren Wirkungen bzw. Nebenwirkungen. Die entsprechenden Angaben werden von den Autoren mit der größten Sorgfalt recherchiert und zusammengestellt. Die angegebenen Do- sierungen sind im Einzelfall anhand der Fachinformationen zu überprüfen. Weder die Autoren, noch die tragenden Gesellschaften noch der Verlag übernehmen irgendwelche Haftungsan- sprüche. 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