Information Needs of Women Affected by Endometriosis and Their Environment: Qualitative Results from Participatory...

Background/Objectives: Endometriosis affects ~10% of women, causing chronic pain, reduced quality of life, and, often, infertility. As endometriosis literacy and awareness are low in society and among health care providers (HCPs), patients are often on their own. The aim of this study was to identify information needs of patients, their social networks and HCPs based on the perspective of the patients as experts. Methods: Four participatory workshops (two online, two in-person) with 45 Austrian women (ages 20-50) diagnosed with endometriosis were conducted. Using pinboards for target groups (patients, partners/social networks, HCPs) and reviews of existing materials, we explored gaps and co-created ideas for information material and dissemination. Results: Participants emphasized the need for comprehensive, up-to-date, evidence-based information on disease progression, multimodal treatment options, and life-stage-specific topics such as fertility, surgical aftercare, or menopause. The necessity of legal and financial guidance (e.g., disability rights or prescription fee exemptions) was highlighted, alongside clear pathways to specialized care. Some of the existing materials or contents were criticized as outdated, inconsistent, or difficult to read. For their social networks, participants requested simple, empathetic materials explaining disease chronicity, intimacy/fertility challenges, and practical support during pain episodes. HCPs were urged to update clinical knowledge, proactively address symptoms, validate pain experiences, and be transparent about treatment side effects and psychosocial burdens. Conclusions: A centralized, co-created, and easily accessible information ecosystem could support patient autonomy, improve trust, and reduce diagnostic delays. Strengthening self-help groups and life-stage-tailored information are critical to improving self-management and mitigating endometriosis's socioeconomic impact.