Exploring clinical trials awareness, information access and participation amongst Australians with ovarian cancer: a qualitative study

PurposeOvarian cancer is associated with advanced stage diagnosis and poor survival rates. Clinical trials are critical for improving both clinical and quality of life outcomes. Challenges exist to clinical trials awareness, information access and participation, but perspectives of Australians with ovarian cancer have not been previously investigated. We aimed to explore clinical trials awareness, information access and participation amongst Australians with ovarian cancer.MethodsUtilising an exploratory qualitative approach, women with ovarian cancer participated in online focus groups and interviews between December 2023 and February 2024. Transcripts underwent inductive content analysis.ResultsFive themes and five subthemes emerged. In theme 1, participants identified "Barriers exist that affect clinical trial awareness and participation" and were explored through their experience of ovarian cancer. In theme 2, participants shared that "Instigating the conversation and doing my own research" was necessary to access clinical trials. Theme 3 describes ideas on "Finding solutions to improve clinical trial awareness and information access" through subthemes: "we need a centralised, credible source"; "communicate clinical trials in various ways from trusted contacts"; and "I want tailored, relevant information". Theme 4 explained that "Altruism is a motivator" in willingness to participate in trials. Finally, in theme 5, participants explained that "Emotions regarding clinical trials are varied" illustrated in subthemes: "feeling left behind" and "feeling fortunate".ConclusionsThese qualitative insights will inform development of a cross-sectional survey for national distribution amongst Australians with ovarian cancer. Results will assist in developing solutions to improve clinical trials awareness and information access.