Hayley Russell

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

Abstract Purpose Ovarian 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. Methods Utilising 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. Results Five 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”. Conclusions These 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.

Listening to Australians with ovarian cancer: a cross-sectional survey investigating clinical trials awareness, information access and participation

Abstract Purpose To inform development of centralised, evidence-based clinical trials resources for Australians with ovarian cancer, a structured understanding of knowledge gaps and resource needs was essential. The study aimed to assist resource development by assessing awareness, information access, and participation in clinical trials of ovarian cancer patients. Methods A national, cross-sectional online survey among Australians with ovarian cancer was conducted between October and November 2024. Descriptive and inferential statistics along with qualitative content analyses were conducted. Associations were examined using Chi-Square and Fisher Exact tests. Results Surveys from 272 respondents indicated moderate knowledge ( $$\overline{x }$$ x ¯ = 4.46/10, SD = 2.34) and a high perception of importance of clinical trials ( $$\overline{x }$$ x ¯ = 9.27/10, SD = 1.17). 56% of respondents reported not receiving clinical trials information and 44% had sought information themselves. Respondents preferred information by email newsletter (34%), through health professional discussions (20%) and accessing an online information hub (17%). Information access enablers included clinicians being knowledgeable about clinical trials, personalised discussions, and access to a centralised information source. Barriers included fragmented information across websites, use of complex medical language and competing responsibilities as caregivers. A qualitative analysis of open-ended responses ( n  = 96) revealed three core themes: ‘we need better solutions to help find information and participate in clinical trials’, ‘weighing up options’ in their decision to participate, and ‘we want to help improve outcomes for women in the future’. Conclusions Results from this study of Australians with ovarian cancer inform actionable change through development of evidence-based, tailored resources. Further solutions and evaluation of intervention effectiveness will continue through sector collaboration.