Developing a set of patient‐centered outcomes for routine use in endometriosis: An international Delphi study

Author:

Nicolas‐Boluda Alba12ORCID,Le Roux Enora34ORCID,Tavenet Arounie5,Bouaziz Jerome1ORCID,Vercellini Paolo67ORCID,Stratton Pamela8ORCID,Fauconnier Arnaud910ORCID

Affiliation:

1. One Clinic Paris France

2. European Association of Value‐Based Health Care Brussels Belgium

3. Clinical Epidemiology Unit, Hôpital Universitaire Robert Debré AP‐HP Nord‐Université de Paris, Inserm, CIC 1426 Paris France

4. ECEVE UMR 1123 Université de Paris, Inserm Paris France

5. EndoFrance Dagneux France

6. Gynecology Unit Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico Milan Italy

7. Department of Clinical Sciences and Community Health University of Milan Milan Italy

8. Office of the Clinical Director, National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda Maryland USA

9. Research Unit 7285 Clinical Risks and Safety in Women's Health and Perinatal Health (RISCQ), UVSQ Université Paris‐Saclay Montigny‐le‐Bretonneux France

10. Gynecology and Obstetrics Department Centre Hospitalier Intercommunal de Poissy‐Saint‐Germain‐en‐Laye Poissy France

Abstract

AbstractIntroductionThere is large variation in individual patient care for endometriosis. A uniform approach to measure outcomes could be incorporated into routine clinical practice to personalize and monitor treatments and potentially improve the quality of care. The aim of this study is to identify a group of patient‐centered outcomes for use in routine endometriosis care which are relevant to all patient profiles.Material and MethodsBy means of a modified two‐round Delphi study with international representation including healthcare professionals, researchers and patient representatives (51 participants, 16 countries) we developed a set of patient‐centered measurements. The participants evaluated 47 Patient Reported Outcome Measures (PROMs) and 30 Clinician Reported Outcome Measures (CROMs) regarding their feasibility and relevance for their use in routine endometriosis care. After the two rounds of quotation, meetings of the experts were convened to participate in a final discussion to finalize the consensus of the final set of included measures.ResultsThe final set of patient‐centered outcomes includes six PROMs (measuring symptomatic impact, pain, work productivity and quality of life) and 10 CROMs (measuring clinical, imaging and surgical indicators). A supplementary list of outcomes was added to include important dimensions that were considered essential by the expert panel but are not relevant to all patients. In addition the need for development of specific tools (PROMs) measuring the psychological impact and the impact in sexual activity of endometriosis was highlighted.ConclusionsWe have developed a set of patient‐centered outcomes measures in endometriosis care. The selected outcomes comprise the common features for all patients suffering from endometriosis. adapted for use in routine practice. The list of outcomes has been adapted for use in routine practice from which clinicians can chose, depending on their needs.

Publisher

Wiley

Subject

Obstetrics and Gynecology,General Medicine

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