Vaginal and vulvar cancer patient experiences of the information pathway from pre-diagnosis to treatment

Purpose To describe the information experiences of vaginal and vulvar cancer patients, including satisfaction, needs, and preferred sources at three key touchpoints: pre-diagnosis, diagnosis, and treatment. Methods This cross-sectional mixed methods study recruited women aged 18+ years living in Queensland, Australia, and diagnosed with primary vaginal or vulvar cancer between 01 June 2022 and 31 August 2023. We obtained self-reports of satisfaction with cancer information (Satisfaction with Cancer Information Profile, SCIP-B, range 7–35), need for information (study-specific measure designed in consultation with consumers including six items from the health system and information domain of the Supportive Care Needs Survey-Short Form, SCNS-SF34), and preferred sources of receiving information (Health Information National Trends Survey, HINTS). Participant-informed recommendations to improve information provision were derived from qualitative interviews. Results Of the 39 women who completed the quantitative questionnaire, 16 also participated in a qualitative interview. Mean scores for satisfaction with information increased from pre-diagnosis (20.8, SD 7.1) to during diagnosis (24.0, SD 8.4) and remained stable during treatment (24.8, SD 8.2). Approximately three-quarters of participants reported at least one moderate-to-high unmet information need at each touchpoint. Doctors, internet searches, and family/friends were the preferred information sources. Seventeen recommendations were developed relevant to pre-diagnosis ( n = 2), diagnosis ( n = 2), treatment ( n = 4), post-treatment ( n = 2), and across touchpoints ( n = 7). Conclusions Dissatisfaction with information and unmet information needs were prevalent among our participants diagnosed with vaginal or vulvar cancer. A variety of participant-informed recommendations were developed which can guide the improvement of information experiences across the cancer care continuum.