Information experiences among women diagnosed with endometrial cancer: a mixed methods study

Despite a growing population of endometrial cancer survivors, there is limited evidence about their supportive care needs. Unmet information needs are commonly reported throughout the cancer journey. This study examined information needs, satisfaction, and sources of information among women recently diagnosed with endometrial cancer at key touchpoints: pre-diagnosis, diagnosis, and treatment.

This cross-sectional mixed methods study recruited women and people with female reproductive organs identified via the Queensland Cancer Register who were diagnosed in the previous 13 months. Self-reported questionnaires were administered and analyzed descriptively. We interviewed a subset of women and analyzed these data using content analysis. Journey mapping was used to describe information experiences across key touchpoints.

Eighty-two women completed a questionnaire and 24 were also interviewed. We found moderate-to-high unmet information needs during pre-diagnosis (58%), diagnosis (71%), and treatment (57%). Satisfaction with the type and timing of information was lowest pre-diagnosis and improved during later touchpoints. Doctors, internet searches, family/friends, and printed materials were key information sources. Qualitative themes highlighted individual variation in information needs, shaped by cognitive and emotional capacity. Women valued clear, compassionate information delivered progressively.

Many women experienced delayed and inconsistent communication about their cancer diagnosis and treatment. Healthcare professionals play a central role in information delivery and should offer clear, timely, and respectful support across the care continuum that is tailored to women's needs and capacities. Addressing unmet information needs at key points may enhance patient experience and enable informed decision-making.