Suboptimal experiences with out-of-pocket costs, financial disclosure, and support information among people treated for cancer

The direct and indirect costs of cancer care are rising and can influence treatment decisions and outcomes for patients. Several patient-level characteristics are risk factors for financial burden, including lower age, chemotherapy, and poorer general health. Health professionals have a role in providing information, resources, and support to mitigate financial distress for patients.

We investigated patient experiences of costs, financial disclosure, and support information during cancer care in an analysis of data collected for the 2019 Cancer Patient Experiences Survey, commissioned by the Victorian Department of Health. All Victorian public hospitals identified people aged 16 years or more who had received cancer care (including monitoring) during the 2018 calendar year and supplied their contact details to a specialist survey administrator. The survey administrator mailed each person eligible for the study a survey with a cover letter stating that the survey was being conducted by the Victorian Department of Health. Respondents who spoke English could complete an electronic or paper version of the survey; people who preferred a language other than English (information provided by the hospitals) completed a professionally translated paper version. The survey items were based on the United Kingdom National Cancer Patient Experience Survey, a literature review, and information from patient and health professional focus groups and interviews. The survey was pilot tested at nine health services...