Background: While the importance of patient perspectives in healthcare is widely acknowledged, the quality of care and lived experience of individuals with endometrial cancer (EC) is underexplored. This gap limits efforts to address inequities and identify meaningful areas for improvement. We explored the experience and perspectives of people with EC and their carers who have received or are receiving care in Victoria.
Methods: This qualitative study used a multi-method approach, including: (1) an online survey distributed via a national Facebook support group for EC; (2) focus groups involving EC patients and carers; and (3) a rapid literature review of Australian studies on EC care experiences. Data were collected between September and October 2024. The survey covered all stages of the Optimal Care Pathway, while focus groups provided in-depth insights.
Impact on practice: Findings from both the survey (7 participants) and focus groups (9 participants) revealed substantial gaps in care. Seventy-one percent of survey participants experienced delays exceeding six weeks between symptom onset and diagnosis. Additionally, 86% reported not receiving information about clinical trials or supportive care options. Focus group participants highlighted concerns around delayed diagnoses, insufficient referrals to supportive services, and poor communication with healthcare providers - factors that contributed to distress and confusion. Participants also expressed the need for peer support, noting the absence of a dedicated consumer advocacy group. The literature review reinforced these findings, pointing to limited national resources for EC prevention, treatment, and survivorship.
Discussion: Unlike other gynaecological cancers (cervical and ovarian cancers), EC lacks a national consumer advocacy presence which created difficulty in sourcing consumers for consultation. This study identifies critical gaps in care and communication, underscoring the need to prioritise patient and carer experiences in policy, service design, and research. Addressing these gaps is essential to improving outcomes and promoting equity in EC care.