Patient Preferences for the Multidisciplinary Management of Endometriosis and Adenomyosis: A Mixed-Methods Survey-Based Study

Background Endometriosis and adenomyosis are common, debilitating conditions frequently associated with delayed diagnosis and fragmented care-based pathways. In Denmark, two highly specialized centres provide advanced endometriosis treatment. However, it remains unclear whether these services adequately reflect the current needs and expectations of the patients. This study aimed to explore patient preferences for multidisciplinary management of endometriosis and adenomyosis.

We conducted a mixed-methods survey-based study in collaboration with the FEMaLe project and the Danish Endometriosis Patient Association. The questionnaire was co-created with inputs from patients and included Likert-scale, multiple-choice, and open-ended items. Patients were recruited online, and data collection took place between February 27 and April 6, 2025. Quantitative data were analysed descriptively, while qualitative responses were analysed using thematic analysis.

A total of 769 patients completed the survey. Multidisciplinary management was highly valued, with 96% [94.4–97.3] rating gynaecological/obstetric physiotherapy, 91% [88.7–92.9] fertility treatment, 91% [88.8–93.0] dietitian/nutritionist support, 90% [87.7–92.0] psychological care, and 88% [85.5–90.3] exercise-based therapy as relevant referral services. A majority of patients also reported several unmet needs, including easier access to reliable information, better-informed healthcare providers, comprehensive long-term treatment plans, and improved continuity of care through appropriate follow-up.

A high proportion of Danish patients with endometriosis or adenomyosis expressed strong preferences for multidisciplinary collaboration, structured referral pathways, and improved access to information. These insights serve as complementary information that may be used to inform the development of more patient-centred care-based pathways for endometriosis and adenomyosis in Denmark. They also provide a foundation to inform future multidisciplinary management strategies and guide the potential establishment of a National Knowledge Centre for Endometriosis and Adenomyosis. Similar content being viewed by others

During the preparation of this work the authors occasionally used ChatGPT 5.1 to assist with English language refinement. After using this tool, the authors reviewed and edited the content as needed and takes full responsibility for the content of the published article. Funding The study has been supported by Hanne Jensen & Martin Vestergaard Fonden (ID: 2024-0011). FEMaLe Project has received funding from the European Union’s Horizon 2020 research and innovation program (ID: 101017562). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Author information Authors and Affiliations Corresponding author Ethics declarations Ethics approval and consent to participate According to Danish legislation, this study did not require formal ethical approval, as it involved no intervention and collected no sensitive personal data [36]. An evaluation by an ethics committee to determine exempt status was also not deemed necessary under the same applicable Danish regulations. The study was conducted in accordance with the principles outlined in the Declaration of Helsinki [37] and adhered fully to EU General Data Protection Regulation (GDPR) standards. Participants received written information about the study, the voluntary nature of participation, and their right to withdraw at any time. Informed consent was a pre-requisite and was collected using a radio-button, which allowed participants to proceed with the survey. The study was pre-registered at the Danish Data Protection Agency through Aarhus University’s internal registration (journal number: 2024-0367531, running number: 1242). Consent for publication Not applicable. Competing interests UBK and FG disclose grants from Hanne Jensen & Martin Vestergaard Fonden. JSK and KEH disclose non-remunerated board positions at the Danish Endometriosis Patient Association, and KEH also discloses a lecturing fee from Gedeon Richter Nordics AB. DH discloses support from Gedeon Richter Nordics AB to participate in a Nordic endometriosis masterclass in 2025. All other authors declare no competing interests. Additional information Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Supplementary Information 12905_2026_4821_MOESM1_ESM.docx (download DOCX ) Supplementary Material 1: Supplementary File 1. Survey “Your Perspective as a Patient on a National Knowledge Centre for Endometriosis and Adenomyosis in Denmark” – English Version. Rights and permissions Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/. About this article Cite this article Gaifém, F., Leer, N., Kiil, J.S. et al. Patient preferences for the multidisciplinary management of endometriosis and adenomyosis: a mixed-methods survey-based study. BMC Women's Health (2026). https://doi.org/10.1186/s12905-026-04821-4 Received: Accepted: Published: DOI: https://doi.org/10.1186/s12905-026-04821-4