Patient preferences for the multidisciplinary management of endometriosis and adenomyosis: a mixed-methods survey-based study

Abstract

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.Aim To explore the patients' preferences regarding the multidisciplinary management of endometriosis and adenomyosis.Methods: 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 in early 2025. Quantitative data were analysed descriptively, while qualitative responses were analysed using thematically coding.Results: 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.Conclusion: 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 for future multidisciplinary management strategies and guiding the potential establishment of a National Knowledge Centre for Endometriosis and Adenomyosis.