The information needs of women with endometriosis in Australia - A cross-sectional mixed methods study

BackgroundInformational support is crucial for women living with endometriosis to cope with the consequences their condition has on their physical and mental health and its wider effects on their everyday life.ObjectiveThe aim of the study was to understand the information needs of women with endometriosis in Australia.DesignA mixed methods study was undertaken using a cross-sectional anonymous online questionnaire.MethodsParticipants were recruited through convenience sampling via Facebook advertisements, as well as newsletters and social media pages of women's health services. Eligible participants included women aged 18 or older, living in Australia, with a diagnosis or suspicion of endometriosis. The survey comprised nine sections, starting with demographics, followed by information needs, and concluding with a section on preferred information formats.ResultsA total of 265 participants from seven states were included in the analysis. Most participants were diagnosed with endometriosis in the last five years. Participants expressed a need for more information across all provided topics, with the highest information needs being on comorbidities of endometriosis (strongly agree 76.98% n=204/265), endometriosis clinics (strongly agree 75.85% n=179/236), and how to deal with dismissal by healthcare professionals (strongly agree 75.54% n=176/233). Through the open-ended answers, participants expressed their information needs on the disease pathogenesis and disease management, including alternative treatment options. Further, information on the healthcare system, including the difference between public and private healthcare, as well costs was highly requested. Lastly, more support for self-advocacy as well as information for the wider population was needed.ConclusionUnderstanding the information needs of women with endometriosis is essential for providing adequate patient support and to empower women to make informed decisions. This research can inform the development of more comprehensive information resources that directly respond to the specific needs of the endometriosis community in Australia.