Co-creative Identification of Endometriosis Information Needs

Abstract Background Endometriosis affects ∼ 10% of females in childbearing age, causing chronic pain, infertility, and lower quality of life. Inadequate awareness among medical professionals and society lead to misinterpretation and underestimation of symptoms. This study explores stakeholders’ information needs based on patient perspectives. Methods Four co-creative workshops (2 in-person, 2 online) were conducted with 10-15 endometriosis patients each, reflecting on information needs of participants, their healthcare providers, and significant others (e.g., family, partners, employers). Existing information materials were critically assessed. Results Medical professionals outside specialized centers were reported to lack sufficient knowledge about symptom diversity, treatment options, and psychosocial effects, leading to misinterpretations of symptoms, lack of interdisciplinary care, and. treatment side effects. Participants rely on self-help groups and own research, expressed a loss of trust in the medical system and suggested curriculum integration and quality control for endometriosis specialization. Significant others lacked awareness of the chronicity of the disease, symptoms, and psychosocial burden. Specific needs include easy-to-understand materials for partners about intimacy and family planning, flexibility in work/school settings, and legal advice concerning workplace protection and disability status. Patients asked for life-phase-adapted, trustworthy, and easily accessible information for themselves, covering reproductive health, alternative therapies, economic burdens, and legal concerns (e.g., employment and insurance). Conclusions There is a systemic information gap on endometriosis across stakeholder groups. Co-creation with patients is a promising approach to develop needs-based, evidence-informed information. Embedding endometriosis knowledge in medical training accompanied by public campaigns are essential for earlier diagnosis and reduced stigma. Key messages • Patients often report higher disease-specific knowledge than healthcare providers, pointing to a need for structured, evidence-based training on endometriosis in professional education. • Targeted and co-created information for health professionals, significant others, and patients can reduce diagnostic delay and foster more inclusive, trust-based care environments.